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May 24-30

This Week

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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, 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 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 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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