A Big Win Fighting Plexiform Tumors - THERE'S HOPE!

I have a HUGE praise. It is best said in an email that I sent to my fellowship group:

This is about Aaron, he is 16 and has NF1 (like Jesse), he lives in South Carolina and travels to the doctors at Cincinnati Children’s Hospital for NF. He has a plexiform tumor (like Jesse) but his is on his spine – deteriorating his spine – and goes down and wraps around his leg. He has had multiple surgeries and has lots of titanium hardware built inside of him to attempt to functionally replace his spine and hold him up. I think you all realize there is no treatment and no cure for NF and that he had had to deal with “there is nothing we can do to stop this” for him and has been devastating to him and his family. Aaron is strong, courageous, humble, and most importantly faithful to God. A clinical trial opened up at the National Institute of Health (the end all highest medical institution – governs all things medical). This trial is an experiment to treat plexiform tumors (like Jesse has). Note that a plexiform tumor is a very complex tumor intertwined with nerve endings and blood vessels so it is impossible to operate on. Plexiform tumors can turn into MPNST’s (Malignant Peripheral Nerve Sheath Tumor), which is fatal. Here is an update on Aaron:
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After 16 weeks of the new drug Aaron and I have returned to The National Institute of Health. We reported to the doctor that after the first couple doses in the spring he has had almost no side affects of the drug he is taking. Aaron had his usual mri and lab work done, his physical and meeting with the doctor. Overall Aaron has handled the medicine well; a few things to keep an eye on are weight(he lost 6 lbs this summer, he needs to have gained weight when we come back), memory (they want to know if the medicine is causing him to have problems in school with memory/learning, junior year is not really a good time to be experimenting with this), and illness (his counts are at a constant low so he needs to stay healthy). They did not have the mri results at the meeting in the afternoon because they have a way of measuring the area of the tumor they can see by volume and comparing to previous scan to get the result. In Aaron's case since they can no longer measure any tumors from his pelvis up because of the hardware in his back they use his left thigh. They reason that if the tumor in the leg grows so do the back tumors and since they believe Aaron's tumor around his left thigh is an extension of his spinal tumor that this will be true for him. Logically then, if the tumor in his thigh is shrinking, then they say the back one does also. At 6:50 tonight the doctor called and told us that Aaron's tumor shrunk 11 percent!!! Holy cow! Tomorrow we will pick up 4 months of medicine and scoot on back to South Carolina.

In December we will return and do this all again and hope for another 11 percent!We are going to plan a trip to Cincinnati to see Dr. Crawford and the genetics doctors for our annual checkup. Dr. Crawford has said that he can't do any more surgeries until the tumors stop growing so we may have a window soon to finish the job, we'll see.Your continued prayers are appreciated, specifically for Aaron's doctors and for Aaron's continued strength and stamina thru the year. One of my favorit verses is Jeremiah 29:11 "For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future." Today was one of those days when God's promises come to life right in front of you.
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PRAISE GOD! I think Jeremiah 29:11 is a very familiar bible verse to those in my fellowship group. These verses that we study keep coming back to us all in our lives along with Praises like this one for Aaron. Not only Aaron though, this is a gigantic praise for Jesse and everyone we know and love that has dangerous plexiform tumors. This is that hope that we so desperately seek. This is a light to remind us to trust in God and believe that he DOES have plans for Jesse and Aaron and all others with Plexiform tumors, he plans for them to prosper and give them hope and a future.
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and this is my response on Aaron's Carepage:
by Jill Markland
I am totally crying!!! I am so happy for this news. Aaron is such a hero to me and to my little Jesse. What Aaron is doing with these trials puts him through so much with no promises. Aaron (and his family) face all of this with such bravery, strength, and selflessness. I am so happy that this is one trial that is finally helping Aaron, but I am also SO GRATEFUL that Aaron has went through all of this and it is offering hope to me for my son, Jesse, who also has plexiform tumors. Finally, there's hope. We don't have to just sit and wait and watch - we are on to something promising. God is good!

Hebrews 11:6
And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him.