Journal

Journal entry by Darla LaDage

I feel like I’ve been beat up and spit out and I wasn’t even the patient. The insanity Wednesday of 11 appts in one day between 5:45am and 5:15pm on the heels of 8 hours Tuesday, and more impending on Thursday was a little too much for us both. Carson had multiple emotional moments while at the hospital. Once at the hotel I crawled into bed at 7:30, turned on the Sower’s Song by Andrew Peterson and cried. Asleep by 8:15. I can not put a finger on the tears except that the build up of emotion and/or anxiety had to be released. Maybe someone else would release it in anger or irritation, frustration...my release came in waves of tears. 


Some of the suffering we as humans endure is just a result of living in this world. God does not cause evil to happen. That being said, because he is sovereign, he is aware, nothing escapes his knowledge, he does allow it. I am comforted knowing he is aware and allowed our circumstances. He would not be sovereign if he missed this detail of our lives until we alerted him. And if he is not sovereign...how would we trust he is faithful, merciful, loving...or anything else his word tells us he is. If he is not sovereign the whole foundation falls out from under us. Suffering without sovereignty would bring a collapse of our faith all together. Interestingly, in our faith, when suffering comes, we often question his sovereignty all together. 


Suffering does have a purpose. Scripture actually tells us multiple reasons God allows suffering. When we question, “Why?” He tells us why in his word. One reason he allows it, is to be able to understand the suffering Christ endured for us. When we can relate to someone...when we have suffered in a similar way...we have an innate empathy for them. I see Carson suffer and endure through these days...multiple needle sticks that leave bruises, laying silent for 3 hours for two MRI’s, 2 sets of X-rays, full body scans, EKG and ECHO, appts with orthopedic, endocrine, ophthalmology, cardiology, neuro-oncology, Neurology, dermatology, PT, OT, and SPL. He has had a cast/boot for 13 weeks without one complaint! (Except he told the ortho team he was sort of disappointed to get rid of the boot because he would have more responsibilities again...spoken like a teenager!) Watching him do it all without complaint humbles me. He is never angry or bitter. He does not question or sulk in self pity. It is amazing to witness. Seeing his bruises from needles and scars on his cheeks, arm, chest, ankle, knee and 6 inches up the back of his head...seeing them every day...all the time...is a stark reminder that on a much grander scale Christ is scarred too and like me, God watched his own son suffer. Ours doesn’t compare to his at all. Christ doesn’t complain either. He is not bitter or angry at us for taking his sacrifice for granted. He does not sulk in self pity. Instead he understands that suffering is heartbreaking and crushing. Psalm 34:18 says he is close to the heartbroken and saves those who are crushed in spirit. 2 Cor 1:3 says he is the God of compassion and comfort. Deut 31:6 says he will never leave us or forsake us. It is a promise! And Romans 15:13 calls him the God of all hope who will fill us with all joy and peace. It does not say he fulfills these promises when life is easy. He fulfills these promises in the midst of hardship, weakness and suffering. 


Carson’s brain MRI continues to be stable. Nearly 5.5 years on his current chemo is keeping it at bay. This drug is not without side effects. The most prevalent one is necrosis in the ankle bone. The surgery was successful and the ortho is very pleased with the healing process. However, the scan of his knees and hips showed a small spot in his right knee that has increased in size. We will go back in April to do more scans of the knees and this time we will add the shoulders. If the spot in his knee is bigger or if he is having pain (he has complained a couple times in the last few months) we will need to address it with another surgery. The hip bones are stable and will not be rescanned in April. 


When Carson made a video to send to the family to tell them his brain scan was stable he said in his best British accent, “ I just want you all to know my scans are stable, yes, I’ll be staying alive for now...I love you all.” I was shocked...what a sad realization for this kid to make. He also asked questions on the way home about if he would have to go off the drug because of the affects on his bones. He doesn’t want to keep having surgeries and he doesn’t want his tumor to grow. His doctor explained to us that we are in a hard place. The question becomes, how long do we stay on the drug? We are cornered….when kids have been off for only a week they have growth. Carson was present for this conversation because we had to sign new papers for the trial and due to his age he had to give his own consent. 


If you have time to go before the Father on our behalf, please pray: 

  • Carson would be open and ask question so he doesn’t worry about something that may not be true or is just too soon to be concerned about.

  • Complete healing for Carson. 

  • Our hearts to accept God’s plan. 

  • The spot in his knee disappears completely and he has no more pain. 


We live an abundant life clinging to him. 

Psalm 16:11 You make known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand.

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Journal entry by Darla LaDage

When bones die in Cancer kids there is most often a reason. When we met with the surgeon 1.5 weeks ago, I needed to know if this issue with Carson's ankle could be caused by his chemo. He can't say for sure but assumes it is. The typical causes for necrosis of a bone are: trauma to the bone, over use of alcohol, smoking and medication such as chemotherapy and steroids. We can certainly rule out 1/2 of those possibilities and do not know of any trauma to the ankle. We are back in Memphis for additional scans of his knees (he has occasionally complained of one knee hurting) and of his hips. Hips are a common joint to suffer from necrosis associated with cancer treatment. There is usually no pain associated with necrosis of the hips so they collapse before there is a known problem. Carson is still on treatment for his brain tumor. He's been on this particular drug for 5 years. Since it is a clinical trial there is not a lot of information because so few have been on it as long as he has. The benefit is that it is keeping his tumor stable. The downside is always side effects. Until now the side effects have been minimal. Present but minimal. If the necrosis is from his meds it's a big deal. 

Our prayer tonight is that no other bones or joints are affected. That is the cry of my heart...that we do not take another step up the ladder of suffering. Our prayer is also that our hearts will accept the results and know God is walking next to us as we CLING to him. 

He says: 
"So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand."

How can I do anything other than trust him? Where else would I go for help? For security or comfort? Can anyone else change our outcome? Can anyone else give me peace? 

Journal entry by Darla LaDage

Post surgery

 

Everything about this is harder than anticipated. Sleeping was a challenge and mobility even more challenging. We had two appts this morning, one being with the surgeon to receive his blessing to come home. He did not bestow that blessing on us. So we aren’t coming home due to pain control. The nursing staff has been really incredible and although I’m already emotional about seeing him hurting and frustrated and not coming home, their tenderness and concern dissolves me and comforts me at the same time. He will have a pain block done later today which should stop all pain from the knee down. They gave him morphine to get through till the sedation. This means he will have another IV. He hates getting them because they often have trouble getting it on the first stick due to deep veins and scar tissue from so many needle sticks over the years. When we arrived this week he had labs on Tuesday, MRI on Wednesday and surgery on Thursday. He opted to keep his IV in all three days to prevent additional sticks. When we got to surgery his IV would not draw a return so they had to start a new one. Thankfully after he was asleep. Today he advocated for himself and asked the nurse if sedation would put him to sleep before doing the IV. He will make that request to anesthesia this afternoon on his own behalf. Usually the IV is used to put them to sleep...so we will see what they say. His daddy has some knowledge in this area and is also offering some suggestions as well!  

 

I asked friends to pray for grace this morning for our trip home. I thought that grace might look like minimal bathroom breaks or that I stay awake on minimal sleep. Those were the answers I was looking for and fully expecting. I was not expecting grace to look like staying here another day....but that is how God had chosen to fulfill my request. And he’s still good. He didn’t answer the way I wanted or the way I thought best. But me getting what I want doesn’t define his character or his goodness. I’m thankful for passages like Isaiah 55:9 that tell me his ways and thoughts are not like my ways or thoughts. When it doesn’t make sense it is not a reflection of his lack. It is a an opportunity for me to trust. Maybe grace for the drive home looks like a more pain free ride tomorrow...I hope so because they put appts in for Monday should pain still be an issue after this block. Neither of us want to stay the weekend. We have an important play to go see this weekend with a girl special to our family in it. 

 

We also now will come back in two weeks instead of 6. Life is full of surprises. I’m thankful I know the one who holds all those surprises in his hand! 

 

Keep praying, friends. Not a single one will ever be wasted!

Journal entry by Darla LaDage

Carson and I have been back in Memphis for the week for normal scans, follow ups and surgery. I wrote this summer about some ankle pain he was experiencing. Turns out it's not all that uncommon in cancer kids. So while the ortho doc in Memphis sees a decent number of cases he sees them in kids with leukemia who are on high doses of steroids Carson doesn't fall into either category. He just doesn't play by the rules! So again, Carson doesn't fit the mold and forges his own way through. Life would be so boring if we could predict and explain everything so simply! (Oh how we love boring!!!) So it is unexplainable at this point why he is having the issue. And actually, it's not just one issue, it's two. He has OCD of the ankle and AVN of the talus bone. Basically, the talus bone is dying and the damage can cause pieces of bone or cartilage to break or slough off causing pain. After many diagnostics, 2 specialist called in, and lots of communication, he had surgery today. He added another piece of hardware to his resume in the form of a screw to secure the broken piece of bone in the ankle. Then...are you ready for this....it blows my mind some of the things the medical world dreams up. It's so creative it has to be a gift of creative knowledge from God instilled in people. They took bone marrow out of his hip bone, spun it down till it was concentrated, extracted the stem cells and injected them where the screw is to help with healing. Then they mixed some with concrete, drill holes into the dying talus bone and inject it into the holes. It's amazing. This did end up being a more invasive surgery than thought. He has a cast up to his knee and is non weight bearing for 6 weeks! I was not prepared for that. We are trying to work with a walker, but he's not feeling the love for the walker. 

Tomorrow we will follow up with surgery and if released, head home. There is no concern at this moment for anything that would prevent us from going home. I am concerned about the long drive and getting him in and out of the van. We have taken some precautions that should minimize the necessity of getting in and out too many times, but would appreciate prayers for an easy, uneventful trip. 

Other requests would be for pain management, quick relief from pain and need for pain meds, that he can learn quickly to navigate life with a walker or crutches, and that we all extend a lot of grace where needed....and for good sleep for both of us. 

We continue to be thankful for each and every one of you who are part of our lives and journey.

No Regrets~
Darla 

Journal entry by Darla LaDage

It’s been a whole year since my last post. As I reread the last one I could really just cut and paste so much of it. Today is 8 years since we took Carson to see Dr. Cross. I feel a heavy weight in my chest when I type those words. The events unfolded 8 years ago over a couple of weeks. This past 2 weeks seem to have drug on and on with many days being reminders of different significant details that we lived 8 year ago for the first time and this year the 8th time. I am in awe of how well Carson is doing. But with that being said and 8 years time lapse….the emotions sometimes are just as raw and fresh as they come unexpectedly like waves...sometimes it is high tide and sometimes it is low tide. It is anyone’s guess which one will come when.



As for Carson, he is well. He continues to take chemo morning and night as the tumor is still present, but still stable. It has remained stable for 4.5 years. When he started the clinical trial, no one expected it to be this successful. While he is doing well….there are challenges. Carson has been experiencing ankle pain. An X-Ray revealed a condition called OCD of the ankle bone. It is a joint defect and unrelated to his tumor. Totally random and uncommon. When the ortho doctor saw the X-Ray he called it an extreme case. Of course it is...Carson has lived life extreme since birth….a birth that lasted 40 minutes from start to finish. (And finished in the car on Labor Day more than a week overdue, mind you.) This is a condition that will likely require surgery at some point….but scars show we have lived life, and since Carson has a lovely collection of scars already, he doesn’t mind another one. He also REALLY likes being sedated.



Sometimes I still wrestle with that collision of faith and trust. This week I wrestle like Jacob when he was going to meet Esau. He wrestled until he was blessed and that is one of the many things I love about God. As long as I don’t let go of him, even if it’s wrestling...he blesses with spiritual growth.



Lord, I trust you with his life...However long you choose for him to live it. I struggle with trusting you for the quality of his life while he lives it. I hate the details….the things he will live with, the things that he does live with and that he may live with forever. They are all minor, but they are many and they take away from the quality. I think my biggest struggle, Lord is that they seem pointless. They feel like they are so minor that he will suffer with them in vain. while I know you redeem each and every detail of suffering...deep down I don’t trust that you will. I can’t see it. How do you redeem a deformed ankle joint that is painful to walk on? How do you redeem his feelings of being fat? How do you redeem, God, that he may never hit 5 feet tall and all the repercussions that will come with that as he enters Jr. High or high school or the job force??? Maybe it is just fear that you won’t. I know in the grand scheme of your plan, these are not important. In Luke you make a strong point that the most important detail of our lives is that our name is written in eternity with you and that while we wait for that time to come we live in close relationship with you. I trust we are secure for eternity and I can’t breath a day without you. But my heart aches for him. That he has to suffer so young and for so long. I grieve his life being normal. Yet I see so much redemption of our whole journey. So much faithfulness.





Psalm 16



Psalm 16:1-11 I have a life verse, but this is not it. This is my suffering passage. It grounds me when the uncertain looms large and fear tries to make me focus on what God could require from me.



VS 5 “LORD! YOU alone are my portion and my cup.” Nothing else. If I have nothing else, I have enough because I have Jesus Christ which means I have salvation. We want to see the big picture of life....there it is. If I lose everything except still have eternal salvation, I have not lost. I still have gain. And since JOY is rooted in salvation and not circumstances, it is possible to still have joy even if I lost everything else.



VS 6 “The boundary lines have fallen for me in pleasant places.” Boundaries speak of security and safety. I know with him I have both. And truthfully, I see my suffering within his boundary lines. He can only give good, suffering is for my good because it sanctifies me and prepares me for eternity....my delightful inheritance.



VS 7 I will praise the Lord who counsels me: even at night my heart instructs me.” At night is when the lies come in...abusing the mind and heart. His word is my counselor at night. I had to teach myself to preach truth to myself and this verse was key to that lesson. Night feels isolated, alone, abandoned...But his word is always available and it fights the darkness.



Which leads well into VS8. “I keep my eyes ALWAYS on the Lord, with him at my right hand, I will not be shaken.” This verse also helped me learn cause and effect. Or his responsibility and my responsibility. My responsibility Keep my eyes ALWAYS on him. KNOW he is by my side...at my right hand. The right hand is the hand of control. If he has my right hand I can not be in control. The result of Keeping my focus on him and knowing/believing he is with me? I will not be shaken. SO when I feel shaken I know one of those two things is off and I have some evaluating to do.



VS 9 Therefore....here come all the promises! Because my focus is on him and he is at my right hand, My heart is glad, i rejoice and I am secure. He promises not to abandon me. He makes known to me the paths of life, fills me with joy, I experience his presence, but later, I will experience it in all its fullness....the way he intended my relationship to be from the very beginning. Perfect. Untainted by sin. Eternal pleasures but here and now in his blessings poured out and later when we are reunited with him forever in a perfect world. I can’t wait.



No Regrets~

Darla

Journal entry by Darla LaDage

I can't decide if 7 years feels overwhelmingly heavy or if I feel overwhelmingly thankful. I suppose it is hard to say because I waiver between the two. It's a long time to live in the unknown and to be immersed in it. We actually just got some really awesome news that I hope, will help tremendously. Carson has been on the clinical trial drug for 3.5 years. So hard to believe it has been so long. We still travel to Memphis every four weeks. 13 trips a year. It is a lot of time away from home, away from Emma, Riley, and Todd, it's just a lot of time away. Time away at a hospital is exhausting because it is emotional. What I see in Memphis, the people we meet and their situations, sometimes I can not even come home and talk about. Sometimes it is so big and heavy it feels like justice could never be given to some people's suffering with words...words that would feel insufficient of the depth of difficulty of their road. We have walked a hard road. Many walk significantly harder.

Today our church reading plan is Psalm 46:1-3 

God is our refuge and strength, 
an ever present help in trouble.
Therefore we will not fear,
though the earth give way and the mountains fall into the heart of the sea,
though its waters roar and foam and the mountains quake with their surging. 

 This promise: He is my refuge and my strength. When hard things happen we have two options. We can turn to God or away from God. 7 yrs ago today, by the date we were waking up at OSF waiting for our very first MRI. 7 years ago by the day of the week (Friday after Memorial Day) we were trying to wrap our heads around a 4 yr old with a brain tumor. Thank you God that in the collision of faith and trauma you were always the only option. Thank you that you were and are our refuge and that we never turned to anything else to anesthetize the emotions that would have been easier to numb than feel. Thank you for being my strength and giving me courage to intentionally make that decision so that I could be changed by you. Thank you for being present in your word. you gave comfort through your word even when everything felt like it was falling and quaking and roaring. When it felt out of control and the unknown loomed enormous....when I thought my heart itself was fragile enough to physically shatter....I so clearly could see your hand of strength and at times could physically feel the gift of your presence. Thank you for your Word and your promises that give us a solid footing of truth to stand on instead of our feelings or what we create to be truth in our head. I need you as much today as I did that terrible morning. Father, while I have completely surrendered Carson to your hand, and know that I will worship you even if you do not answer my prayer for him in line with the desires of my heart I thank you and worship you for how well he is doing now too. 

I nearly forgot the great news. After this next trip to Memphis next week, we will only have to go every three months! Four times a year instead of 13!!! St. Jude has been asking the drug company for this phase three of the clinical trial for almost 2 years. It has "been coming" for well over a year. When we were there four weeks ago the research nurse had given up hope. She called me just a few days later telling me it had been passed through! I cried. Actually, I sobbed. It's hard to be gone so much. My teen agers are getting older and I am starting to feel the press of minimum time left with them. I want to be as present as I possibly can. 

Thank you to all who prayed for Pastor Tim! He was back in the office this week and will be preaching Sunday. No doubt it will be heartfelt with some emotion on the heels of his circumstances this last month. You can check out the sermon on harvestpeoria.org. He will be preaching on the above scripture from Psalm 46. 

God is my refuge and strength~
No Regrets~
Darla

Journal entry by Darla LaDage

Carson found some fun flashbacks on the internet tonight when he searched his name on google. We are coming up on our 7 year anniversary of diagnosis. I am so thankful for the place we are today over the place we were 7 years ago. The unknown can drown a person if they don't know who their anchor is. Ours has always without wavering been the Lord. He is the only constant that never changes. People will fail us. We will fail ourselves. But in the darkest, hardest moments, hours, days, weeks, years....He will NEVER change and NEVER fail us. Our responsibility is to keep our focus on him no matter what the outcome is. He can do incredible work in a person's heart even when the circumstances don't end the way we want them to. 7 years is a long time. At the 5 year mark he did some serious surgery on my heart as I walked some of the darkest months. He walked me through what I would do if it were not his will for Carson to have a long life here on earth. Knowing I would still worship him, even if he healed Carson at a young age in heaven instead of earth, was the single most healing process he walked me through in the entire last 7 years. I am so thankful for security in Him. 


For 3.5 years we have been going to Memphis every 4 weeks. Carson is still on 2 doses daily of chemo that he takes at home. We head back to Memphis Monday for scans and a multitude of other apps. The schedulers are pretty amazing in that they can cram 10-15 apps in 2-3 days! We are hoping to fly so he doesn't miss much school. 

At this point scans don't bring a lot of concern. He is in a good place with no symptoms to cause alarm. Regardless...we always appreciate prayer! 

My biggest prayer request is for our pastor. I can not describe his passion to preach the word of God and speak its truth without apology. He will be having surgery for the third time on Monday to have a brain tumor removed that keeps growing back. His last surgery was three years ago. It is close to the carotid artery making it dangerous to remove all of it. His wife, and two daughters along with our whole congregation covet your prayers for his surgery, the medical staff, recovery and for their hearts along the whole way. Thank you so much. 

If you don't have much time to pray...please let Pastor Tim be your priority.

If you have time for Carson: FIRST and FOREMOST.....We PRAISE GOD that the tumor has been stable for 3 years!
We also LONG for this tumor to shrink and continue to ask him to shrink it. 
Safe travels
if we get to fly down please pray our return doesn't have to cancel for weather
(sometimes a common occurrence)
Thank you all so much for your continued faithfulness. So appreciated. 

Check out these flashbacks from our early days of diagnosis in 2011.
Might be easier just to google his name. 

http://www.centralillinoisproud.com/news/top-local-news/child-diagnosed-with-brain-tumor-sells-lemonade-for-st-jude/101139165

http://www.pjstar.com/article/20110721/NEWS/307219859

Journal entry by Darla LaDage

As we approach the 7 year mark I am most thankful for being able to look back and see God's hand so clearly over the years. I sat with a friend who did not have a relationship with the Lord (yet) as she struggled with her desire for a relationship and her fear of a relationship with a God she did not understand. She passionately said to me with anxiety permeating her voice, "I don't care what God can do for me when I die. I need him to help me NOW!" 

I was struck by the wisdom she voiced in her need before she even knew him. She was right. We talk about Jesus dying to give us the gift of salvation and that is a BIG deal! Everyone say, "It's a big deal!" We all sin. Every day. We are not even capable of getting it right even a little bit. Jesus Christ traded us places. Him for me. He suffered on the cross a horrendous death because of me. My sin. But he did it because he loves me. He came to give us life. Abundant life. And that we shall have for all of eternity. But my wise friend was right. We need him NOW! Every day. 

Luke 24 says,


“Why do you seek the living among the dead” We serve and have relationship with a savior who is ALIVE!  Only God could accomplish such a feat and because of it he is involved every day in our lives interacting, loving, protecting and caring for us. It gives hope to me every day because without the full course of events, if he didn’t die and then rise, what would be the point? He conquered death!!! He conquered death. I NEED to know that. If my son does not survive, Jesus conquered death even if it doesn’t feel like it and there will be a day we are all together because he died and because he conquered it.


I think about God watching Jesus suffer and how I’ve watched Carson suffer. There is nothing he has endured that I have not been holding him on my lap, laying beside, crouched over him, or at the very least my arms around him while I whisper reassurance or sing. During the hardest things he wants the second verse of Jesus loves me sang in his right ear. I am not just close, I am in the middle of it all. But when Jesus suffered, he had to do it alone because of me. Because of my sin His father could not even look at him. I love you Lord and I am so sorry you suffered because of me and more so that you suffered alone. I am thankful you knew the will of your father and you followed through. I am thankful you knew you would have the victory after you suffered “ a little while” I bet it didn’t feel like a little while. 7 years doesn’t feel like a little while either...even though we are in a  season of walking around it. But your word tells me 1 Corinthians 15:57 & 58 that when we labor in the LORD we will have victory! We absolutely have already in the way you have changed us and we have the hope because of your word and your promises that we will have victory no matter the circumstances. “You will crush his (Satan’s) head and we win!” Thank you for dying and living so we can have life eternally. But I can’t live this life without you here in the middle of it all. I need you here and now and I am thankful you have given me abundant life here. My circumstances don’t dictate my feelings. Your promises dictate my hope! My circumstances are temporary. Your promises are true and eternal. I love you.

No Regrets,
Psalm 16:5-11
Darla

Journal entry by Darla LaDage

It's been way too long since I have given a medical update on Carson. I've said before that no news is good news and that stands to still be true. Carson is doing great! It is mind blowing that we are three years into the clinical trial. Three years ago this week Carson started the trial after much gut wrenching decision making, prayer and seeking counsel. They told us then he could be on it two years or until he grew immune to it. They anticipated immunity because it is fairly common to grow immune to medication. After two years the response was so positive the drug company that wrote the trial approved for him to remain on it as long as it continued to be effective. As we approach the three year mark we are so pleased with the results. December will mark three years of the tumor being stable! That is incredible. It shrunk by about half at the very beginning of the trial, but has remained stable (for the most part since.) He should be the poster child for research right now as this trial is proof for it. St. Jude with Washington University in St. Louis sequenced the genomes for over 800 patience helping them pinpoint the genetic factors behind some of the hardest to cure pediatric cancers. "The roots of pediatric cancer are hidden deep within a child’s DNA. The St. Jude—Washington University Pediatric Cancer Genome Project is the world’s most ambitious effort to discover the origins of childhood cancer and seek new cures." ~St. Jude.org

As a result of Carson's most excellent response to this drug trial, his neuro-oncologist and his team are pushing to make this treatment the first line of defense against tumors with the same gene mutation as he has. He IS the cutting edge of research! It is a mutation of the BRAF gene. If you are a science nerd it is called BRAF v600e. Google can tell you all about it....understanding it is a whole other issue. It would be amazing for parents to not have to endure what we did the first three years. His first chemo drugs were harsh and caused shooting pains in his head that made him cry out, tingling and numbness in his feet, and compromised blood counts. If they could start with this drug and skip all the MRI's that reported growth, what a beautiful thing that would be. 

Of course all drugs have side effects, especially after three years. While Carson is doing well we are watching some things with his heart. The beauty of a clinical trial is that these kids are so closely monitored that not much can escape the watchful eyes of his whole team. His thyroid is also now having some issues. We assume damage from radiation. He has been on thyroid meds for about 2 years and it has been stable with medication. Suddenly last month it was double what it should be. After reducing meds now it is too low again so meds are adjusted accordingly. Messing with hormones messes with emotions and energy. Hard things for an 11 year old. 

The other issue that is becoming a bigger concern is he is not growing taller. The drug has inhibited the pathway that the tumor uses to grow. Unfortunately, growth hormones use the same pathway and those too are cut off. For this reason there is NO solution to the problem. Growth hormones would make tumor growth too high of a risk. One we are not willing to take yet. His growth has been slowing but now has been unchanged for several months. Sadly, as many of us may understand, just because we stop growing taller does not mean we stop growing wider. So we are now counting his calories and seeing endocrine and nutrition. That sucks for an 11 year old. BUT....he is such an easy going kid. It is actually better to count calories than for me to be telling him what he can and can't have. He needs to have some accountability for his decisions or I am just always the bad guy if I say no to something. Still sucks for an 11 year old, but he makes mature decisions without being upset or complaining. More than I can say for myself sometimes. 

Carson still sees a dermatologist every eight weeks to check for changing moles since the gene mutation often is seen in melanoma. He has had a few biopsies in the past that were all negative but they continue watching every. single. mole. in every area of his body! And he takes it like a trooper. He also continues to have his vision monitored, MRI's, Neurology appointments, PT, OT, speech assessments, all every 2-3 months. We continue to travel to Memphis every four weeks to accomplish all these appointments according to the timeline the protocol requires and to pick up his chemo. 

You will never waste a prayer on us! So here is the list if you would bless us in that way. 
~ HE NEEDS TO GROW! I'm asking God for 4 inches by next summer. 
~His thyroid to be stable.
~The tumor to shrink!
~His heart to stay strong and healthy. 
~Wisdom for his team of doctors and for us. 

Journal entry by Darla LaDage


We are not hopeless. This weekend was an incredible display of community love and support for these sweet kids who have suffered with cancer. An event like the St. Jude run....so many coming together for a cause they believe in, even though for many it has not touched their family personally...yet they run, they cheer, they give from BIG hearts. And that, I do NOT want to down play. Carson is paving the way of new treatment for kids with his type of brain tumor because of his positive response to the drug he takes every day. With out St. Jude I do not know what his current medical condition would be or if he would even be a survivor right now. If this tumor had continued to grow, as it has been so incredibly stubborn, it would start to affect his heart, breathing, cause seizures, more vision, hearing and swallowing issues. Eventually, it would take his life. St. Jude's research has given us three more great years and prayerfully many many many more to come. Saint Jude is the saint of hopeless causes. There was an old newspaper article on display this weekend that was about St. Jude Hospital "giving hope to the hopeless." The article could have been written about any medical establishment and the work they do to help those in crisis situations. Someone this weekend said that St. Jude does God's work....they do an amazing job of taking care of the kids and families....financial, medical, physical and even spiritual. I know it did not intend to say we are hopeless in the way it came across to me. Danny Thomas was a great man and went through great lengths in his personal desire to give back to the world for his success. The people who work for St. Jude are amazingly passionate and incredibly kind. But just incase anyone perceives our circumstances as hopeless, I just need to clarify. We are not hopeless nor do our circumstances make us hopeless. Because...or hope does not come from Saint Jude or from St. Jude. Our hope is not built on medical success. Our hope is built on Jesus Christ. Hope means: expectation of what is sure (certain.) Nothing is certain in this life. Except the great love of God the Father who gave His son, Jesus Christ, for us. And the reason He gave His son to us is so that we can live no longer seperated from Him. Our hope: because we have made Him Lord of our life, is the expectation of what is to come. Life with Him is certain and THAT is HOPE. If Carson lives to be 11, 25, 45 or 85 our hope remains the same. He recently asked Jesus to be his Lord. Heaven is his hope: what is certain.

Ephesians: 2:4&5. But because of his great love for us, God, who is rich in mercy, made us alive with Christ even when we were dead in transgressions—it is by grace you have been saved.

Romans 15:13 May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

Journal entry by Todd LaDage

No father should have to create a caringbridge website for his 4 year old son but today I have. Carson has a tumor in his brain. Who would have thought? Thousands of families have to do this everyday. I am thankful for CaringBridge to allow this free website to update Carsons progress.

Carson is doing well today. You would not know there is a tumor in his brain. He is playing Thomas and friends game cards right now with Grandma Jo.

We have one more swallow test and then we go home today. We have a big date with Grandma and Grandpa LaDage in St. Louis over the weekend. The doctors and nurses are allowing us to have one more "normal weekend" before our lives change on Tuesday.

Already, we are overwhelmed with the love and support of family and friends. We promise to ask you if we think of anything but right now, we are planning to spend every moment with the lil man before Tuesday. Please feel free to email or text us. Facebook will work also.

Tueday is the big day. Your prayers for us up to and on that day is greatly appreciated.

Thank you friends,

Todd

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Carson’s Story

Site created on June 2, 2011

Friends and Family,

Thank you for visiting Carsons website. Your cares, prayers and concern for him and us are greatly appreciated.

We will be updating Carsons progress on this website. We are so thankful for each of you who offer to help. We promise to ask if we think of something. Our number one request is prayer and petition God daily to completely heal Carson.  


Our love to you,

Todd, Darla, Emma, Riley, and Super C (Carson). :)

Carson LaDage is the 4 year old son of Todd and Darla LaDage. In April and May of 2011, Carson had difficulty walking straight, even walking with a limp at times, and his head was tilted to the left. In June, he began to stutter and we took him to our pediatrician. We were admitted to the hospital for testing and revealed a 1.5 inch by 2 inch tumor in his brainstem. Carson underwent surgery to remove as much as the tumor as possible on June 7th. Thanks to the many who prayed, he was able to go home without any serious side effects the doctors mentioned (feeding tube, tracheostomy tube, etc.) Carson had a mediport put in his chest June 24th with the plan to begin chemotherapy on July 8th.

We ask for your prayers for Carson. We ask for your prayers for the doctors and nurses treating Carson for wisdom. We ask for prayers for Todd and Darla; for guidence and wisdom and strength. We ask for prayers for his Emma and Riley and the entire family. Thank you soo much!

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