I took these pictures of Noah tonight as we walked around the hospital. We got a break tonight in the chemo drugs so Noah was able to leave his room and the 4th floor. We found a tri-cycle he could ride (it has a handle for mom to control in the back) and headed down the elevator to roam the halls. Being a holiday weekend we had plenty of room for him to roam. The three pictures above are of him laughing at cars passing underneath the glass enclosed bridge we were on. He loves this bridge because not only can he see traffic, but it is still decorated Christmas and has Christmas music playing in it. In the image of him on the right, I purposely shot his face out of focus, trying to capture what was making him smile so much - the flashing lights and greenery all around. The hallway is very long. It leads from the hospital to the Children’s Harbor building across the street. It is a place for kids and parents to retreat, relax and play. I think Noah enjoys watching the traffic more than he likes the facilities it leads to. : )
I stood back and let Noah and Jessica go ahead as I took this picture. I looked at this hallway and was thinking about how far we have already come with this process - and how very far we have to go. Six months seems like a long time to undergo treatment, but in some of the other cases we have met here, six months is a short time.
I experienced something yesterday I did not anticipate and wasn’t ready for. We were sitting in the oncologist exam room talking with one of the doctors. He asked if we had filled out the consent to treat form yet. We had not. In the business of Christmas I had forgotten about them. They are documents we have to sign to allow Noah to receive the drugs involved with chemotherapy. Some of the sentences in these documents are hard to swallow. I read about how nothing is certain in this practice of medicine. It could work, then again it could not. It could possibly cause him get another type of cancer down the road. It will weaken his immune system making him vulnerable to infection and even death. The line at the bottom of the page for my signature was blank. I had to make a decision to sign it. I immediately knew what that meant. I was agreeing to trust other humans to put toxic and somewhat poisonous chemicals inside my son, chemicals I know nothing about. I am agreeing to allow him to undergo discomfort, pain and to have the potential for infection. I am putting my trust in something that scares me to death. I saw what chemo did to my grandmother, aunt, and father. I didn’t make the decisions for them to receive it, they did. But now I am making a decision for my son. I have felt a tremendous weight of guilt from all of this.
The first round of chemo didn’t go so well. Noah didn’t react to the first drug like they hoped so they stopped it. As I watched him cough and get red all over I felt helpless, afraid, and guilty. They stopped the drug after a very low blood pressure reading. Noah immediately changed after the drugs were stopped. He came back to normal very quickly. This gave us a lot of relief. A chaplain came by to check on us. He had heard we were new to the floor and had had a rough day. He asked us how we were doing and I decided to bear all to him. I told him how I was feeling guilty about Noah going through this. I know chemo is our only option but still we put our names on paper allowing him to go through this. He spoke a great word of encouragement to me.
He said God gives us children, and the responsibility to take care of them is ours. We can only do what we know, think, and feel is best in our heart for them and the rest we have to leave in God's hands. We must trust that in the options God gives us, He also provides wisdom to make the best decision. We have to trust that He will perform what we cannot.
I know Jessica and I cannot fix Noah. God has granted him the blessings of surviving brain surgery, recovering remarkably, and having some of the best doctors around. We are trusting that this treatment is something God uses to heal, and that as Jessica wrote yesterday - He isn’t abandoning the ship during the storm.
Noah will really feel the effects in 7 days. We have to give him a shot every day to keep his white blood count up, get blood work done twice a week and come to children's every 4 weeks to do the treatments. I know that we have the strength and faith to make it through this - I can’t wait 'til it's all over. But until then we will take it day by day, smile by smile, and step by step.
Thanks for all of you who have prayed, sent letters of encouragement, cards and gifts, Noah is one blessed boy because of your love. We are eternally grateful!
What a day. We arrived at Children's around noon and rushed to the clinic for Noah's 12:15 appointment. We had a few set-backs with paperwork, etc. but made it for the MRI appointment just a few minutes late. The imaging staff was so nice and compassionate - I was able to go into the room where the machine is while they sedated him. He was still frightened, but in about 2 minutes he was falling asleep, and I quickly left the room so they could get started. I'm so glad I was able to have that experience; it will be much easier to let him go in without me next time since I know how quickly it all happens. After the scan we were admitted to a room on the 4th floor - "4 Tower" as they call it - and so it began. Our nurse (once again) was amazing and we should also have her during the day tomorrow. Noah has a huge crush on her - he has flirted with her and serenaded her with his harmonica since the first moment they met. :) I honestly haven't seen him this energetic and full of life and joy in a while. I can tell the prayers are going up! He has been stuck in a crib entangeled with iv lines and has only complained a few times...that is a miracle in itself!
The first drug he was given was called Etoposide; they had to stop about 15 minutes in because he was having a slow reaction to it. Typically the reaction occurs immedietly, but the Dr. on call came down and decided to try a "cousin" drug in the morning that usually doesn't cause a reaction at all. They had to make sure there was no blood in his urine, then he was given a drug called Cyclophosphamide. So far he has been ok with it.
It is after midnight and Noah is still awake. I hope he can get some sleep before the next round starts in the morning. I feel a lot less stressed now that we have started the treatment. If it's possible to have peace in the midst of the "storm" of stress/anxiousness, that's what I feel. The devotion I read today came from Mark 4:35-41, where Jesus is asleep in the boat with a storm raging around Him. His disciples woke Him up saying, "Do you not care that we are perishing?" He calmed the storm then asked them, "Why are you afraid? Where is your faith?" In the past few weeks I have prayed that God would give John and myself that calm assurance that Jesus had in the boat. He knew there was a storm, but he also knew that He had a much greater purpose and that storm would not kill Him. Calvin Miller stated in the study, "Peace:" Can it be that most of our lives are lived without this recognition? Doesn't God have much more for us to accomplish? Should not our own security in troubled times come in remembering this? We have God's living Son on board in our lives. Therefore, we may have confidence that in our own stormy situations He will calm the turbulence and give us the confidence of His presence. Then, once our storms are all at rest, like His disciples we may remark, "What manner of man is this Jesus that even our private tempests are subject to His calm?"
Praise be to the Lord for the peace that He gives, and for protecting Noah today. Thank you for your continued prayers...we will post more tomorrow/ as soon as we're able. God bless!
"Joy is more than a sense of the comic, more than earthly pleasure, and to a believer even more than what we call happiness. Joy is the enjoyment of God and all the good things that come from the hand of God." - Sherwood Wirt
I can honestly say that I have experienced more joy in this Christmas season than I have in seasons past. We spent Christmas Eve with my extended family and Christmas day with John's. Watching Noah interact with everyone and play with his new toys is just like watching any other normal 2 year old. His recovery after the surgery really has been phenomenal. His physical therapist commented today that his motor skills are where they should be for his age, and his hair hasn't even grown back yet (referring to the time it normally takes to recover). He has recovered really well, and John and I are very lucky, she said. We're not lucky...we're covered in prayer!
Because it has been such a wonderfuly normal past couple of weeks, I had pushed Noah's situation to the back of my mind, only to be reminded today that our Birmingham trip is quickly approaching. With that realization came the temptation to worry and fear. Chemotherapy is such a scary word, and with it comes so many unknowns. John and I are about to lead our son down what appears to be a dark path; I've read so many stories about how chemo affects children, and each one is different. We don't really know what we're getting into. It is here where there isn't any light showing us where our next step will lead that we must cling to the Light of the world. I have to keep reminding myself that He knows...and that is all that matters. I can only pray in faith, and that is what I'm doing - praying that the MRI will reveal there is no residual tumor and chemo won't be needed!
I write all this through tears, because I am really struggling to fight this fear. The enemy is trying to steal my joy, but I am fighting hard to keep it. When you pray for Noah, please also pray for me and John. Noah is so intuitive, and he knows me well...I don't want him to sense any fear from either one of us. We have got to be strong for him - be warriors for him. Pray for the Lord to encourage us and replace our weakness with His strength.
Noah won't be able to eat after 7am on Wednesday, and we are scheduled to begingthe 3-day process at 12:15pm. Noah's port will be accessed for the first time, and I'm unsure how he will handle that. After the MRI he is scheduled to begin the treatments. As always, John and I are so thankful for everyone who reads our blog and prays for our comfort and Noah's healing. We will try to post a blog as soon as possible after we get in a room on Wednesday and know exactly what the plans are. Happy New year to all and may it be blessed and filled with joy only the Lord can give. :)
The Lord is my Light and my Salvation - whom shall I fear? The Lord is the stronghold of my life - of whom shall I be afraid? When evil men advance against me to devour my flesh, when my enemies and my foes attack me, they will stumble and fall. Though an army besiege me, my heart will not fear; though war break out against me, even then will I be confident. One thing I ask of the Lord, and this is what I seek: that I may dwell in the house of the Lord all the days of my life, to gaze upon the beauty of the Lord and to seek Him in His temple. For in the day of trouble He will keep me safe in His dwelling; He will hide me in the shelter of his tabernacle and set me high upon a rock. Then my head will be exalted above the enemies who surround me; at His tabernacle will I sacrifice with shouts of joy; I will sing and make music to the Lord. Hear my voice when I call, O Lord; be merciful to me and answer me. My heart says of you, "Seek His face!" Your face, Lord, I will seek. Do not hide Your face from me, do not turn Your servant away in anger; You have been my helper. Do not reject me or forsake me; O God my Savior. Though my father and mother forsake me, the Lord will receive me. Teach me Your way, O Lord; lead me in a straight path because of my oppressors. Do not turn me over to the desire of my foes, for flase witnesses rise up against me, breathing out violence. I am still confident of this; I will see the goodness of the Lord in the land of the living. Wait for the Lord; BE STRONG AND TAKE COURAGE AND WAIT FOR THE LORD. - Psalm 27
John and I haven't heard much about the radiation report, which is more than likely good news. The lawyer had his "expert" take a look at it and he didn't seem to think the levels were too high, and we haven't heard from the oncologist yet. Noah's bald spot seems to be growing larger, and now we have no clue what could be causing it.
Other than that Noah is still doing great. He's as active as ever, and is really getting into Christmas. He loves opening all the gifts he's been receiving, and now he thinks that every gift under the tree is for him. I've had to re-wrap several times. :)
We've been to the store a few times and have been stopped by several people. I want to say thanks to those who approach us to see how Noah's doing and to let us know they're praying for us; it means so much that our community is standing behind us and is lifting us up in prayer. Just wanted to let everyone know we haven't officially heard anything on the radiation report, but we'll post another blog as soon as we do. I hope everyone has a blessed Christmas!
You're probably wondering why I posted this picture of the back of Noah's head. I'll get to that in a bit.
First I'd like to apologize for not posting anything in such a long time; we've had a week of PT/OT visits, Christmas shopping/preparation, and just normal life stuff. John and I had a great anniversary dinner at Ruth's Chris (we're high cotton now - thanks Abby & Courtney!), we fought the wait-'til-the-last-minute-to-buy-your-Christmas-gifts-traffic in Huntsville, and we took Noah to Santa's Village (where we did not see Santa), then ran into Santa at our church on the way home. Noah likes him from a distance but did not want to get close, so I'm glad we didn't wait in the line to see Santa while standing outside in 39 degree temperature!
I posted the picture above because John and I noticed a small patch of Noah's hair had worn away (a few days ago) and last night we realized the small patch had grown to be a 1x4" area that looks dry and irritated. We had no clue what was going on (why would his hair just randomly fall out?), and we remembered a report on a local news station about a woman who suffered hair loss (among other things) due to over-radiation from a ct scan at Huntsville Hospital. The hospital is being investigated right now, and we have contacted a staff member about this situation. Some people may think we're being paranoid by assuming he could have been given too much radiation, but it's happened to 60 other people in our area, and with everything else Noah has been through that "typically doesn't happen" we decided it's best to check into it. We are going to the hospital at 10am tomorrow to pick up a report that will tell us how much radiation he was actually given during his ct scan. If he was mistakingly given more than the normal dosage, this will mean that Noah was given too much radiation in his ct on Saturday 11/21 and then was burned during his MRI procedure on Sunday 11/22. I'm praying this was not the case. This could also more than likely affect his chemo. schedule which will start on Wednesday 12/30. John has spoken with a lawyer who is handling many of the other cases that have occurred at Huntsville Hospital.
I have no idea what else could cause Noah's hair loss. Because of everything that has happened to him, I am assuming the worst possibility...please pray that whatever has caused this will not affect anything else in his body. If you have any other suggestions as to what can cause this please let us know. We will also contact his dr. in Birmingham in the morning about this situation. Please pray for God's will to be done in this. Hopefully our instincts are wrong and it's nothing to worry about!
I will do my best to post an update on this situation tomorrow afternoon/evening after we have more info.
I hope everyone is having a great Christmas week, and remember the "Reason for the season!" Tonight John and I were discussing how this "holiday" has become something it shouldn't be; I hope this year will be free of stress and full of joy and peace....and family. We have 2 miracles to praise God for this Christmas - His son...and our son. :)
We had a good day today - Noah's arm is healing nicely, so Dr. B. gave the ok to go ahead with treatment. We didn't actually have an appointment to meet with Noah's oncologist, but we stopped by her office anyway to see if our results were in. Thankfully we got to speak with her! Here is what we found out : the results of the lumbar puncture were clear of any cancer cells. The results from Dr. Burger at John's Hopkins were different from the original pathology report. He found that Noah's tumor is a choroid plexus carcinoma; we were told this is very rare. (WebMD reports between the choroid plexus papilloma and the choroid plexus carcinoma, "these types of tumors account for 0.4% to 0.6% of all brain tumors, 2% to 4% of brain tumors in children, and 10% to 20% of brain tumors manifesting in the first year of life. Papillomas outnumber carcinomas by a 10:1 ratio. ") Only 2 children in the past 8 years have been treated at Children's in Birmingham for this type of tumor. The same treatment regimen has been used on both children, and will also be used in Noah's case. We are confident in the ability of Noah's oncologist to choose the best treatment for him. We were told this is an aggressive, fast-growing tumor. The best form of treatment is surgery/chemotherapy. Since Noah has already been through surgery, our next step is chemo. He is scheduled to be admitted on Wednesday 12/30 to begin his first round of treatment (of at least 6). Each round will require a 3-day stay in the hospital, then 4 weeks later he will go through another round, and so on. Also with his first treatment he will have another MRI to see what kind of residual tumor is there....we're praying there will be NONE! If they do in fact find any "leftovers," they will wait until after round 3 of treatment to go in again, with the hopes that the chemo will have reduced blood supply to tumor (since it is so vascular) and will be easier to remove. Now, you may remember that after the last MRI Noah's neurosurgeon commented that he believed they may have removed most of the tumor. I realize that he has to choose his words wisely, and that this next MRI will reveal better how much tumor he actually removed...but we're still believing that it's completely gone! Back to the treatment: we have been given some information on 3 different drugs that will be used in Noah's treatment, and the side-effects that most likely will follow about 5 days after treatment. We are asking that you now pray not only for Noah's tumor to have been completely removed, but that the chemo will not have the typical affect on his body and it does on most children. We are asking God to keep him healthy, energetic, strong, etc. throughout the duration of this treatment.
Today was a sobering day, but a good day. Noah responded well to all the medical staff, he did great during the long haul back and forth to the hospital, he even lasted through about 30 minutes of our church's recognition dinner tonight. When we finally arrived home, he played the drums, "sang" and "played" his guitar, hit the baseball off the T a few times, ate some ice cream, hammed it up for my mom's new video camera....you would never guess my little man was ill. And that made it a good day.
Once again, thank you for your prayers, support, and love. Our story should print in the new "Athens Now" this week for those in our community that haven't heard our story. I pray Noah will continue to bring encouragement and hope to those who are searching for it...and I pray he will point many to the One True Source of hope - Jesus Christ. May God bless you!
It was been 24 days since Noah's tumor was discovered, 21 days since his tumor resection, and 13 days since we've been back home. The past three days have felt (almost) normal! Saturday we laid around most of the day, did a little shopping, had some friends over. Sunday John was back in the saddle leading worship and Noah made it through the entire service. We had lunch with my family at my grandparent's, then took a fun family outing to the big city of Huntsville. :) Today was Noah's 6 month check up at the ENT; ear tubes are still in, and they look great. Praise God for that! He is doing MUCH better with allowing "outsiders" into our home, and going into large groups of people. When we first came home from the hospital even familiar faces (grandmothers, aunts & uncles, etc.) would cause him to panic and cling to me. I'm so glad that is over and he feels safe again. Hopefully John and I will be able to leave him with my mom on Thursday for our 4th anniversary dinner. :)
Today Noah began to have a little hop in his step, as if he is trying to run. He's moving pretty quickly now. It's amazing to see when I think about where we were 25 days ago, wondering what was wrong with him. We are still waiting on the definitive pathology report from Johns Hopkins, and the LP results. I'm praying those will be ready when we go back to Children's this Wednesday for Dr. B. to check out his arm.
Today I have a little girl (EB) on my mind...she also was diagnosed with a brain tumor, and was still in the PICU on Friday after a surgery complication. Please pray for EB. A man from church, Bobbie Lassie, is awaiting results from a CT scan...there was a mass discovered on the R side of his brain. Please pray for him also. I trust God will work miracles in both these situations.
"God has not given us the spirit of fear, but of power, love, and of a sound mind" (2 Timothy 1:7). Over the past 24 days I have experienced a myriad of emotions...one of them being fear/anxiety. But each time this feeling tried to take over, I was reminded of this verse. I knew I had to have a clear head to share with John in the decision making process. The Lord has reassured me so many times of His sovereignty, even in the midst of chaos and confusion. The devotion I read today reminded me that we need not fear "because greater is He who is in you than he who is in the world" (1 John 4:4). If I attempt to look too far into the future, I become overwhelmed with "what-ifs" and begin to loose my head. I just keep telling myself to take it one or two days at a time. Right now Noah is sticking a plastic drum stick up his nose, and shouting, "ho, ho, ho!" I'm praying that he will still be able to do these things after we start chemotherapy. But I'm not going to worry about or fear the upcoming treatment. I may be tempted to, but that is just a thought I can take captive and put out of my mind. (Remind me I said that!) I don't know what is causing your fear or anxiety today, but no matter how "big" or "small" it may be, you can take that thought captive and cast it into the sea. Ask God to lead, and think of those two scriptures above with me, and we'll kick the enemy, together, right in the face. I hope everyone has an amazing week! We will post a blog as soon as we hear anything about the reports. God bless!
Friday was a LONG day. John, Noah, and I were on the road at 6:30; were we told to be at Outpatient day surgery by 9:30. We walked into the day surgery registration area around 9am, filled out all the necessary forms, got Noah's vitals...then we waited. And waited. AND WAITED. By noon, Noah was starving and constantly asking for milk. (He hadn't eaten or drank anything since 830 the night before.) We were finally told that Noah was #5 on a list of 5 people his surgeon was working on that day. Despite his discomfort, Noah did well during the waiting and John & I were able to keep him entertained for the most part. At 1 pm we were finally called into an outpatient room. Then we waited more. Around 2pm a nurse came in and asked a few questions, and informed us that we were actually scheduled for surgery at 1pm and Noah could have eaten breakfast. About this time I was really losing my patience and becoming angry. Noah did not go back to the o.r. until 3:30. He had his burn excised (sp?) and stitched together, a port was placed through the area around his collar bone and threaded to an artery, and he had a lumbar puncture. We should receive the reports from the LP and Johns Hopkins around the same time - middle of this next week. We also go back this wednesday to have Dr. B check out the burn site. If it is healing properly, and we have results from the tests, we should be clear to begin chemo.
We were told Noah did really well; all the procedures went as expected - he didn't need a skin graft!! So we were able to be discharged last night, and we drove home while Noah devoured several mini packs of Pringles and lots of milk and ice cream! At this point - I'm just glad he eats. :) He is doing great - right now he is walking around with a basket on his head and playing the drums.
Yesterday mine and John's patience was tested to the MAX...but we did ok. We had a small explosion occur when Noah returned from recovery to his room - we discovered staple marks in several places. The nurse explained that the drapes are stapled to the body to hold them in place. We never realized this was common procedure in the o.r. so we had to have to Dr. paged to explain it in detail. We now realize it is for the patient's protection from infection, etc. But when John saw those small knicks on Noah's legs and stomach, it was all he could do to keep his hands to himself. I was proud of the way he handled the situation. (Before that we had been told by a different Dr., once again, that the investigation board was not certain they had found the cause of Noah's burn, and they may not ever come to a definite conclusion. That was like throwing oil on fire.) All throughout the day I had to keep telling myself that other people have been in our shoes...and much worse. We can make it through this, and we can do it in a godly way. We just had to keep asking the Lord to guide us...and it ended up being a great day - Noah did well in surgery; he didn't need a skin graft; we were able to come home to our own beds.
On a different note - Thursday I was making preparations for our trip to Birmingham and decided to take our cat to the vet (she had fleas and needed shots). I dropped her off and planned on leaving her for the night since we wouldn't be home. I received a call from Dr. Pitman around 5 - our cat had FIV, or kitty AIDS! He told me that with all we were going through we didn't need this, and Noah definitely did not need to be around her; he could get a bacterial infection. Jones had to be put to sleep...another unexpected bump in our plans. Dr. Pitman so generously offered to take care of her for us, with no charge, and bury her little body so we didn't have to come get her and worry with that. We are SOO grateful to him and his staff for having compassion on us and helping us out in this way. During our wait yesterday, I discovered online that only 2% - 3.5% of all cats in the US contract FIV. 2%. I believe that we heard about 4-5 times yesterday, "this typically doesn't happen but you should be aware of this risk...." I don't want to hear that anymore! For the past 3 weeks events that have occured in our lives "typically don't happen." They told us there was a small chance that Noah's lung could be punctured during the port procedure...I prayed really hard during this surgery! Praise God that He kept Noah safe and everything went well.
I don't know why these strange things keep happening...why God has allowed them to happen. But I do know that John and I will continue to call on the name of the Lord, because He is the source of our strength. If we didn't have Him, His word, and our brothers and sisters in Christ we would be crazy!
The Lord has really been using these hymns to speak to my heart...Because He Lives is another that came to mind this morning. I remember singing this with such sincerity just after I became a Christian at age 17. I weep now as I read ALL the lyrics...
God sent His Son, they called Him Jesus; He came to love, heal and forgive
He lived and died to buy my pardon, An empty grave is there to prove my Savior lives
How sweet to hold a newborn baby, and feel the pride and joy he gives
But greater still the CALM ASSURANCE this child can face uncertain days because He lives
And then one day I'll cross the river I'll fight life's final war with pain,
And then as death gives way to victory I'll see the lights of glory and I'll know He lives....
Because He lives, I can face tomorrow; Because He lives all fear is gone...
Because I KNOW He holds the future, and life is worth the living just because He lives!
The constant reminder that God holds my son...our son...in the palm of His hand, that His protection surrounds him, that I can have calm assurance knowing that because Jesus lives Noah doesn't have to worry about his future...this gives me peace and floods my heart with love.
This is becoming my online journal I suppose, but I had to this down. He is so good and constantly giving us encouragement through many different ways. It's going to be a good day! :)
Today was a long day. It started out very early for us...around 5:30 am. We got up & got ready to go to Birmingham where Noah had three appointments today. We hit the road around 7:15 after filling up with gas and breakfast. The drive down was very nice. I listened to Rick and Bubba rant about our Press Secretary for a while then flipped to some Christmas music; that seemed a lot more soothing than grown men complaining about other grown men.
Our first appointment was with the burn doctor who took one look at his arm and said she wanted to fix it as soon as possible. So Noah has surgery this Friday. It will be a skin graft taken from his hip. The neurologist nurse came down, looked at his stitches and head and said it would be great to install a port for chemo in his chest at the same time. Then we took him to the oncologist and she wants to do a spinal tap to make sure there are no free roaming cancer cells in his spinal fluid. So on Friday, Noah is getting a three-in- one surgery. We feel pretty good about it because it saves him the pain of getting ready for these procedures by two times. I know he will be very sore and uncomfortable when he wakes up which only means one thing - unlimited ice cream! (And by the way as you can see in the picture he is eating a corn dog, he has gained 4 pounds since the surgery!)
In speaking to his oncologist today we learned his pathology report had been sent to one of the best pathology doctors in the world at Johns Hopkins Hospital. They are awaiting conformation before finalizing the plan of action. We discussed what kind of treatment they are recommending and how long it might take. Chemotherapy treatment has come long way in the last years and they have a lot of confidence that we could be finished with the threat of cancer in 6 months to 1 year.
It is so odd saying my son has cancer. It doesn’t seem to make sense coming out of my mouth. The last 24 hours have been a little bit difficult for me spiritually to be honest. You know that feeling you have when you’re pretty confident that things are going to work out one way, and then they totally don’t?? It's not a good feeling. I know many of you reading this perhaps had the same feeling as I did. So many people praying the same thing all over the place and God still says no?? Man - what a disappointment. I have no problem saying it. I am extremely disappointed. I had very high hopes that we had come to the end of our trial. But it is not the end. Not by far.
During these last few weeks, different parts of scripture have suddenly begun making sense to me. I have been in church all of my life, heard countless sermons and read many books and bible studies. Many parts of the bible I can quote you the scripture, but not really sure why it's there. I can give a text book answer for why it's there, but when it is time for scripture to really come alive in your heart, it is only the Holy Spirit that makes it happen. And that’s when it becomes Rhema.
I have read this passage a lot of times. I have understood it to mean Jesus was tempted in the same ways I am - in anger, lust, greed, pride, doubt, envy etc... and that He can identify with my struggles,
Hebrews 4:14-16 Seeing then that we have a great High Priest who has passed through the heavens, Jesus the Son of God, let us hold fast our confession. 15 For we do not have a High Priest who cannot sympathize with our weaknesses, but was in all points tempted as we are, yet without sin. 16 Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need.
But I have never thought about Jesus being disappointed in God saying no to a prayer He prayed.
Matthew 26:38-40 Then He said to them, “My soul is exceedingly sorrowful, even to death. Stay here and watch with Me.” 39 He went a little farther and fell on His face, and prayed, saying, “O My Father, if it is possible, let this cup pass from Me; nevertheless, not as I will, but as You will.”
Jesus knows what it is like to want one thing from the Father, to pray for it, and receive a NO for an answer. I have thought about this scripture all day. He asked "let this cup pass from me" and God said "No.”
I have never noticed that God said no to his own prayer. I have read this time and time again, but it really didn’t make sense to me until today. In order for us to have a High Priest who can identify with us in every area, He must know what it feels like to go through such deep disappointment, to have a prayer not answered, and still be able to say "Not what I want, but what You want."
I still have no right to be upset with God. I can still trust God. I can still lean on God, I still have hope in God - My faith is still in God to heal Noah. Oh God, not our will, but Yours be done in Noah.
We covet your prayers during this time. I am asking specifically that you pray for Noah to remain full of joy and peace as he goes through this treatment, that Jessica and I remain strong, that our light shine and that God be glorified through this season of our lives.
To God be the Glory, Great things He has done.
A short note from Jess...
I was excited about writing the update tonight but John beat me to it. Once again, we had a pretty emotional day, and like John said it's hard to realize that our child has cancer. He had such a fun evening with his Mimi, laughed and chased balloons as John would blow them up and let them fly every which way across the living room, turned his nose up at a grilled cheese and requested just potato chips (becoming an every day staple, much to my chagrin). We picked up a super nice gift that a high school friend sent to Children's for him, and played with the puzzle for about 5 minutes, then he discovered the box it came in...the puzzle was history! He seems like such a normal 22 month old (aside from his ginormous scar) until I remember, this kid has cancer. I realize that in about a month I will be reminded of this truth every minute of every day if chemo takes it's toll on him like it does so many others. And you know what is sad?? We are not alone in this predicament. Thousands of children are diagnosed with brain cancer every year. And I never knew that until now. I feel like I've been called to action to alert the world that this is serious, and it's probably in your backyard, or just down your street. I don't know how I will do it...but I just want to reach out and hug any parent who has ever wept over their child, begging to take their place, pleading with God to move the cancer from the child's body to their's...it's the most helpless feeling I've ever had.
We have a pretty "musical" family; we loves all genres. John and I both grew up immersed in anything music related, and we want the same for Noah. Right now he loves Michael Jackson and will dance around the house yelling, "Woohhh!" when he hears his favorite song. I've just recently picked up playing the piano again, so I was thumbing through my old Baptist hymnal, butchering most of the songs I attempted to play. I came to one that I'm sure is an old favorite for many. The words brought tears to my eyes, and I was encouraged in a way I never have been before by this great melody. Christ is my Rock...I will not be shaken by disappointment or grief, anger or sorrow. Here are the words penned by Edward Mote:
My hope is built on nothing less than Jesus' blood and righteousness,
I dare not trust the sweetest frame, but wholly lean on Jesus' name.
When darkness seems to hide His face, I rest on His unchanging grace.
In every high and stormy gale, my anchor holds within the veil.
His oath, His covenant, His blood, support me in the whelming flood.
When all around my soul gives way, He then is all my hope and stay.
When He shall come with trumpet sound, oh may I then in Him be found.
Dressed in His righteousness alone, faultless to stand before the throne.
In Christ the solid rock I stand, all other ground is sinking sand, all other ground is sinking sand!
I hope these words speak to someone else who is trying to stand strong in the "flood." He is our Rock!
I (Jess) received a call from Noah's neurosurgeon at exactly 1:46pm. These are the findings: Noah has a malignant tumor, it's called a Primitive neuroectodermal tumor (PNET). It turned out to be what Dr. Wellons suspected during the surgery. They have sent the sample on to Dr. Peter Berger at Johns Hopkins to review for confirmation. He said there were lots of different cell patterns in Noah's tumor, and I don't know yet what that means. The tumor board at Children's is putting together a plan of action, will include surgeons, oncologists, radiologists, therapists, etc. I have no doubt that Noah will receive that best care possible. Dr. Wellons was hopeful about the scan after the surgery, that they removed most if not all of the tumor, so that is the hope that we have now. We are going to Birmingham tomorrow to meet with about the plan for his burn, and will also possibly meet with the neurologist, Dr. Reddy, while we are there. We will wait until we receive word from Johns Hopkins before Noah begins any treatment, and let his incision heal. As I'm typing this Noah sits in his high chair, eating Pringles, and laughing hysterically at his silly dad. He is always so happy...just looking for something to laugh at. Because he is so young, he has no clue what the future holds; he is oblivious what treatments lie ahead, and that is the best place for him to be. He just wants to laugh at life, and I'm praying that we can laugh our way through this battle. We're still believing for a healing, however long it may take. Thank you for praying, and continue to pray for healing in Noah's body!
A quick note about my statement of being disappointed about the news segment last night: I was frustrated that we had so much good to say and it wasn't broadcasted. I do however want to thank all of the staff for the hard work they put into the segment; I know it wasn't easy creating a story from nothing in a matter of 4 or so hours. Maybe in the future we can do a story on the miracles that have occurred as God is bringing us through this difficult situation. Anyway, I appreciate the channel 19 news team and apologize for my candidness last night.
Here is a short excerpt from a book we were given at Children's called Childhood Brain & Spinal Cord Tumors, a Guide for Families, Friends, and Caregivers by Shiminski-Maher, Cullen and Sansalone: "PNET and medulloblastoma were once considered the same type of tumor that arose in different locations in the brain. Historically, medulloblastoma was the name given to this tumor when it grew in the posterior fossa and PNET when it grew outside of the posterior fossa in the cerebral hemispheres. For many years, the two names were used interchangeably regardless of where the tumor grew. Recent research has shown that the two tumors are biologically distinct. However, they are usually treated the same, although some institutions are using high-dose chemotherapy with stem cell rescue to treat PNET."
I will post the excerpt about medulloblastoma later tonight; I'm sure you can find tons of information online also. We still have hope, and we still trust God's plan for us, and we still believe Jesus is Noah's healer. Praise God for His sovereignty; we don't have to worry about this.
Today has already been a long day. We have blank note cards with pens on top of them in different parts of the house in case we get the call from the doctor. We want to be able to write everything down they say so we will be able to share the information with everyone. It is difficult to curb the anxiety.
Romans 5:3-4, "We also rejoice in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope."
We did have a great few moments at church yesterday. We were able to take Noah to the 11 o'clock service at Friendship. We were not sure how he would react to all of the people. He did ok for about 30 minutes. Jessica took him home after that so we didn’t get to say goodbye to all of our friends who wanted to see him. But at least we got a little bit of time with him there. That’s a huge lesson I have learned from this. Maximize the time you have and celebrate every moment!
As you can see, daddy got a new hair cut. Noah was very attached to his hair. He has been rubbing his new bald spot every day with a sad face. He doesn’t like to look at himself in the mirror. So I thought I would get a matching cut. (He likes to rub it.) Since seeing me we have laughed a lot about our weird hair. I hope this will help him deal with the many changes he is experiencing.
- John David
This is Jess - adding to what John wrote earlier tonight: I have to keep saying thank you for the emails. I feel so at peace about whatever the outcome of the pathology report. God has encouraged, given us hope, peace, and comfort through scripture and the emails of His messengers - you.
John posted on Facebook that a guy from news channel 19 showed up at our door today around 1pm - unannounced by the way - and wanted to do a story on Noah. We accepted, and surprisingly Noah cooperated during the entire shoot! We talked mostly about the miracle of Noah's story and how the Lord has helped us through the entire process. We talked BRIEFLY about the burn Noah received. What we saw on the 6 o'clock news only spoke of the burn Noah received, and hoped the 10 o'clock news would offer up the ENTIRE story, but that didn't happen. I guess "controversy" is all that they were after. I'm deeply disappointed in the outcome of the interview; I've been very nervous about the entire burn situation with the Athens newspaper and now the local Huntsville news station becoming involved. Children's Hospital helped to save my son's life, will continue to treat his medical condition, and I want no ill repute with them. We've given them an opportunity to make this right without taking legal action, and I have faith that they will. I just hope that they don't feel that we have instigated these reports in order to make Noah's situation more "public."
That being said, I'm off to bed. We should receive the pathology results in the morning - keep praying! We will post the news as soon as we have it! Here is a scripture that has comforted many times in my Christian journey, and I'm falling back on it tonight: "Wait on the Lord; be strong and take courage and wait for the Lord" (Psalm 27:14). He hasn't failed me yet - and I know He never will. So I will wait on Him to bring good news in the morning!
Today has been a great day of relaxing, laughing and hanging out with Noah. We have been waiting all day for the call to come from Dr. Wellons' office about the pathology. We did not get the call. The office of Dr. Wellons closes at 3:00 today so it is our guess we will have to wait until Monday. That means more time to PRAY!!
I did receive a call today from Vickie Atkins, Patient Safety/Risk Management Officer at Children’s Hospital. They still think it was the space blanket (Thermoflect is the product name, thermoflect.com, pictured above) which was placed on Noah metal side down. It was not the warming blanket. She assured me the hospital would take care of everything and even said she was mailing a letter to confirm it. She said they would contact the EPA and tell them about the incident and make sure these blankets never get near an MRI again. The blankets have been removed from the MRI unit at UAB and they are taking every step they know to insure this never happens again.
I would like to thank Athens News Courier for their story on Noah's burn and for also contacting the hospital to get their comments.
God assures us in His word that if we allow Him, He will take care of us. It seems very unnatural to not step in and follow what the world does in similar situations. We know that God has a plan in all of this and that He is taking care of it.
It was today two weeks ago that Noah and our lives were changed forever. I will never forget that moment when doctors walked in, sat down and told us about his tumor. Through all of this I have learned the value of something that has been in my life all along but I took for granted. That thing is - Family.
First of all our immediate family. They have been such a source of support and strength. It is in the moments of tragedy when you really realize that family is so very important. They sat with us all night in the waiting room of the PICU, stayed with us for days just to be there to help and pray. They were there to cry with, laugh with and sit with. For those who don’t have the blessing of family like we do, I don’t know how they make it.
I say this to encourage you - reader, that if you are at odds with your family - do whatever it takes to settle it. You need them and they need you. God gives us family because He knows we are designed to help each other and lean upon each other in times of trouble.
Secondly I realize the importance of friends (second family). When you go through trouble you really see who your friends are. For everyone who has called us, visited us, reconnected after long years apart, sent us encouragement - we love you so much. I couldn’t imagine walking through these last two weeks without my second family holding up our arms through so many encouraging messages and your prayers.
Our church family - Friendship Church in Athens: You hear all the time, "You don’t have to go to a church to be a Christian;" I agree with that. It is only the blood of Jesus Christ and His death and resurrection that insures us of salvation when we give our lives to Him, not going to a church. You don’t have to go to a church - but I can tell you this, God designed the church to be like family. He designed it to be a body, and when one part of the body hurts, the other parts jump in to help. What a blessing to have such an awesome family!!!! If you are not a part of a Bible believing church - you are really missing out.
Friendship Church - You have helped us so much with prayer and encouragement and support. God has and will continue to use you to be His hands and feet. So to you - reader - if you’re not a part of a good Christian family, don’t stop searching until you find the place God wants you to be because believe me, when tough times come - you will need them!
To our community on Facebook and those who have contacted us through this site. We may not live near each other, we may not really know each other but know this - we love you. So many people we have never met have sent us messages of hope and encouragement at just the right time. I own a Blackberry. You have no idea how many times I would feel a moment of weakness or frustration and see that red light on the phone blip and look at the new message or email God would use to strengthen our legs one more time.
I talked to a few people today who commented how "great a faith" Jessica and I have. I don’t really understand that comment. We believe that God is the one who gives us faith when we need it. There is nothing special about us; we just serve a very special God who has chosen to lead us down a path that is difficult. He has never left us, and has not forsaken us. His peace has guarded our hearts and minds and His Holy Spirit has given us comfort in our most desperate hours. He has used our family, friends and church to encourage and speak to us and to provide many of our needs. If you trust in Him, He will lead you and provide and protect you and give you wisdom and self control, you can walk through situations like ours and even ones that are worse.
So to sum up today’s thoughts -
1) If you haven’t given your life to Christ and trusted Jesus as your Savior, you need to do that. He is the way, truth and the life. No one comes to the Father (God) except through Him. He is the only thing in life you need.
2) Get your family junk sorted out because very soon either you will need them or they are going to need you.
3) Get into a church family, one where you can bless others and that can be a blessing to you. One day you are going to need them, and they are going to need you.
4) Don’t be afraid to use social network sites like Facebook to witness your faith or be an encouragement. I tell you the truth, I have heard from God so much because of that website! Let your light shine on the web.
I didn’t mean to get preachy, but sometimes you just got to say what's on your heart.
We hope to hear on Monday what the pathology lab finds out. Until then please keep praying.
It is about 10pm, my little man is sound asleep in his bed, my sweet husband is playing a song he's recently composed on his guitar, and I am in my favorite place to be...home. I haven't actually blogged in several days due to sickness and just plain being busy and tired. So here is what's been going on: Wednesday morning we anxiously awaited the neurology team to make its rounds. When they finally came by our room, Dr. Wellons said Noah looked good, we should watch the swelling, etc. and we're free to go! After being discharged, we headed for the parking garage and I don't think Noah had ever been so excited to see the car. He ate Cheetos and french fries on the way home (so nutritious), and got about an hour nap. We arrived home to find that some "elves" had rummaged through our attic and decked our home from top to bottom, inside and out! What a relief to not have to worry with putting up "Christmas," and Noah had a festive, peaceful place to come home to. We have some amazing and thoughtful friends!
Being home has been great; there is now some normalcy back in our lives. Even so, I've realized that nothing will be normal again. All day long John and I have been jumping at the sound of the phone ringing, hoping it would be Dr. Wellons or his nurse with the pathology results...no such luck. So, we'll just keep praying and expecting good news to come tomorrow.
Oh, by the way, Noah decided to walk last night! He slid off the couch, grabbed John's finger, and took off to change the DVD he was watching. Still a little wobbly, but he was pulling up his left leg, and placing a considerable amount of his weight on it. (A HUGE improvement from even Tuesday's PT session.) Praise the Lord, this child will be running before we know it.
For some reason, tonight I am at a loss for words as to what I should write in this blog. The only thing in my mind right now is the scripture from Matthew chapter 17: "When they came to the crowd, a man approached Jesus and knelt before Him. 'Lord, have mercy on my son,' he said. 'He has seizures and is suffering greatly. He often falls into the fire or into the water. I brought him to Your disciples, but they could not heal him.' 'O unbelieving and perverse generation,' Jesus replied, ' how long shall I stay with you? How long shall I put up with you? Bring the boy here to Me.' Jesus rebuked the demon, and it came out of the boy, and he was healed from that moment. Then the disciples came to Jesus in private and asked, 'Why couldn't we drive it out?' He replied, 'Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, Move from here to there, and it will move. Nothing will be impossible for you.' " (v14-23). Right now my husband is praying ceaselessly for our son. Cancer is our demon. We are believing in faith that the Lord will drive it far from Noah. We know this mountain can be moved by our faith...if the Lord choses to grant us that. But if He doesn't....we will still continue to fight this battle, knowing that He alone is faithful. This is a daily battle and we are so grateful for all the prayer warriors that are fighting with us. We can't do this on our own, and we praise God for the support that has been given by so many. Because of the prayers of faith of so many, maybe one little boy will receive a healing that will bring glory to the Lord even beyond the days of his life...this is my prayer of faith.
Our Friendship Church youth group is doing something amazing. To help remind people to pray for Noah and help offset Noah's medical cost, the youth ministry is asking for a $5.00 donation for the PRAY FOR NOAH bracelet. The color grey represents brain tumor awareness and research.
It's been a long day today. We had some really great moments, and some not so great. First let me give you the good news.
Tomorrow we will be going home!! Noah has recovered so well that his doctors are letting us go home. He will begin therapy soon as we get home to get everything working back to normal. We met with speech, occupational and physical therapists today. Some things he hasn’t lost - like most of his speech and motor movement in his right arm. He will have to learn to walk again. It was a very hard thing for me to watch him not be able to stand on his own. But after everything he has been through I am glad that is one of the few problems we know of so far. I have heard some stories from some amazing parents these last few days. They have called us to encourage us and help us maintain hope. Their stories have inspired Jessica and I and have also made us realize just how blessed we are that Noah has recovered so quickly, He is still weak and swollen but he has got a lot of fight in him. I praise God for His mercy and goodness and that Noah is still here and has a future and a destiny!
This morning we laughed a lot, ate breakfast together, played with some toys and watched Elmo. The doctors came and examined him and told us to expect to leave sometime Wednesday. I was so thrilled. After they left I asked the nurse if we could speak to someone from the burn unit to help us know how to tend to Noah's arm. They arranged for one of the nurses and a burn doctor to come up. This is where our day turned sour.
I have received several emails about this blog where people have thanked me for my transparency. I have put off writing tonight because I really don’t want to be transparent but ... here goes anyway, I've got to vent!
All this time, nurses from the burn unit have been tending to Noah’s arm with bandages and a cream called silver sulfadiazine. It helps the burn heal and also soothes the skin so he won’t hurt as bad. We thought that this treatment was the only thing Noah would need in order for his wound to heal. When the doctor took a look at Noah's arm, she remarked that the burn was so bad; he would need a skin graft. She explained the burn had gone deeper than the hair follicle root and the skin would not grow back, they could wait for six weeks to see how it would heal on its own then try to sew it together, but she told us it more than likely wouldn’t work. A skin graft was the best solution. Man - this hit us hard. Noah has an appointment next Wednesday with her to evaluate and set up the day for the graft. This is another procedure where he will be pricked, cut and put to sleep for. He will have skin removed from his buttocks or thigh. I can’t tell you how upset this made me.
Talk is so cheap these days. If we are to check out and leave the hospital Wednesday, I wanted some assurances that what Dr. Young told us in the MRI would be honored - that the hospital would take care of everything concerning Noah's burn. All costs, prescriptions, travel reimbursement, and whatever else goes with it. The doctor told us she would get a representative from the hospital to come talk to us. It took a while and I had to ask our nurse to make a phone call to get them to our room. When they got there they told us the strangest thing.
They made the remark that they didn’t believe Noah's burn occurred in the MRI with the space cloth like we were told before by the scientist, but instead it may have happened in the recovery room after they laid a cotton towel on him. The towel had been in a warmer.
I couldn’t believe my ears. It was probably the stupidest thing I have ever heard. Jessica and I were very insulted. We may not be scientists or physics majors but we are intelligent enough to know how hot something has to be to burn to the third degree.
Before I go on I will say that this was no scientist or technician who reported this to us. So perhaps she left out a ton of information. And I mean a ton. And by no means am I saying these people are stupid or un-compassionate or un-empathetic. They have a job to do and are doing it their best. We just wish we could talk to the boss who gave them this information.
The last time I checked a cotton towel cannot burn to the third degree unless it is on fire itself. And if it was in fact a towel or heated blanket, why in the world would you heat one up so much that it could burn through every layer of skin??? And how is it that it only burned one part of his body - and how how how how did you figure we would believe such a thing??? We are wondering - "is there something they are trying to cover up? Why change the story?"
We felt a great sense of closure last Wednesday morning when Dr. Young sat us down and explained their findings. He said that the anesthesiologist had placed a blanket on him to keep him warm before going into the MRI room and it contained aluminum, The MRI staff did not remove it and they think it reacted with the machine and it arced and burned his arm, now they change the story? What’s the point? They say they tested the blanket and it doesn’t react to electric charge. I wish I could remember the name of the blanket. Perhaps some of you smart guys out there could help me out. (It has a blue cloth top and the bottom is shiny & reflective.)
I really wish they could recreate the scenario they are talking about because I really want to see this super heated blanket they say burned him. Remember - they did not say it was an electric blanket - they said it was a blanket that came out of a warmer - something to warm the blanket.
I grill a lot at home and I know how hot something must be to sear and burn. If the person who put it on Noah's body could not tell that it was too hot, then obviously it didn’t do it. If they did know it was too hot then they should be held liable and face criminal charges. If it were so hot, how could they even hold it? All of these questions raced through my mind.
If the hospital would give us a clear definitive answer to the cause of Noah's burn - that would be great. Something that makes sense and isn’t absurd.
If they could guarantee in writing that Noah will be taken care of in every area that would be great - we haven’t got anything like that yet - only the word of mouth and as you know these days - talk can be very cheap.
As you can tell I am upset. I have already taken two walks tonight and have held my tongue and my anger. Thankfully Jessica's Uncle John was here for a time and it really helped to have him in the room while I was talking to a hospital representative. Jessica said I did alright which means perhaps I didn’t say things out of my anger.
You know, we had such a good morning and were having such a good day until all of this. Now frustration comes to spoil the celebration that we have in Noah’s swift recovery.
As I took my long walk tonight I began hearing that "still small voice" of the Holy Spirit. "Cast your care upon me.... take my yoke upon you.... Don’t worry about your life...."
I realize all these frustrations are on my shoulders. I must give them over to God and let Him handle my family's situation. He can deal with them a lot better than I can. My thoughts tonight as I walked shifted to the Israelites on the boarder of the promise land. Twelve spies went in to check out the land. Ten came back saying the people were too great to be overtaken, two believed God and said "let’s go! The battle is the Lords!" (My paraphrase) The ten held their fears and frustrations on their shoulders and allowed them to dominate their actions and decisions. Joshua and Caleb, the two spies with a good report, believed God would fight for them and give them victory. I know that in my frustrations here I am in no way in a fight like Joshua and Caleb, but I am in a fight. I am fighting frustrations, doubt and fear. I fear that the hospital won’t honor their promise since we have nothing in writing, I am fighting doubt - holding on to hope for a good pathology report, and I am fighting frustrations with these answers that make no sense. It all adds up to a lot of stress to be honest.
God tells us to "Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. 7Cast all your anxiety on him because he cares for you. Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour" 1 Peter 5:6-8
Notice the devil prowls looking for an opportunity to devour us, steal our faith, our witness, our joy, our hope and our peace. But God has a mighty mighty hand that we are to stay under. We cannot handle the frustrations in this life on our own, the best thing to do is to stay under God's hand and let Him handle it for us. If we step too much in the way we mess it up. The ten spies did, they stepped in front of God and told the people false information.
When fear comes, most of it is false or bad information, when frustration comes, unless we give it to God we can’t see our situation like he sees it.
I must remind myself that this burn on Noah's arm did not happen by chance - God allowed it for a purpose. It's not my place to question and ask "Why God?" What I must ask is "What now??"
We are leaving Birmingham tomorrow after meeting some of the finest medical professionals in the world. God used their hands and this hospital to save the life of our son. We are so very thankful for those who work in the PICU, the surgeons, the nurses and staff. We are thankful for this hospital, we have seen some big miracles here.
Our biggest hurdle is next - the phone call that will ultimately change our life. The pathology report. We pray for a good report - God's will be done!
Please pray that in all these things God will work it out for good and be glorified. Pray that Jessica and I will represent Christ even when we are angry, "In your anger do not sin," Ephesians 4:26.
Please pray we will really get a closing answer on this burn mess.
But most of all pray for Noah - that he will be healed and God would get the glory for this! Pray that God would mold him to be a man after His own heart. Pray that God would use this do change the world for Christ!
God bless 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.