Wednesday, September 1, 2010

Latest information on Riley Philpot

For those of you who have been following me I wanted you to be updated too...

Posted 8 hours ago
Our days have been passing quickly and thankfully Riley continues to feel good. The kids have started back to school which has added additional stress to our household. Earlier bedtimes, hectic mornings, and busy afternoons are hampering our ability to play, relax, and just enjoy the kids, but on the other hand we are thrilled to still be in the normal routines of life despite our not so normal situation. What a balancing act of trying to act normal to fit in, yet being unable to ignore the facts that are staring us in the face so we can best prepare ourselves, our family, and our relationships for what may be the hardest time of our lives. In preparing our relationships we have many to consider and several that are crucial to preserve. So we pray that God will remain visible to us and that we are able to continue raising our hands to Him in praise and thanksgiving for the wonderful things He will craft from this situation.

We tried to update a couple of times, but our hearts ached so much that we would have only caused pain in others. We know others hurt with us, and spilling out our pain and sadness would not have helped anyone.

As others move on, the odd circumstances of our life are magnified. Thoughts of anything else are difficult for us as our minds are flooded with emotion but oddly many at the same time - hope, sadness, belief, doubt, anger, joy. We are overwhelmed as we cannot stop what is happening and it often seems unreal. We wish it were not real, however we don’t know His plan or what is to come, so we yield to His plan knowing that only He can master all the details to get us where we need to be for all of eternity.

Many try to encourage us with “don’t give up hope”. You do not need to fear us giving up hope, yet I think there are two types of hope. Hope for Life here and Hope for Life eternal. We do struggle to keep hope for “here” strong, but our hope for eternity is our anchor to Him. The latter is the type that was given by Christ and can never be taken away. We don’t want to bypass our hope for life here nor do we want to jump straight to our hope for eternity since Riley is still feeling well and we still hope for her to be healed here on earth. Even though Hope Eternal will sustain us for our life here, it doesn’t protect us from heartache. We don’t fear for our loved ones that will go home to Him, but fear the pain of living here without them.

So we pray for peace and for acceptance of His will. We pray for peace for you also. Riley’s concerns so deeply affect many and create some of the same feelings we have in others. We hope you too can work toward letting go of your hurt, fear or anger. Let Him help you so you can help us and others and we will pray for the same.

Riley had a follow up scan done Wednesday which showed that tumor in the right lung has grown significantly and 3 new tumors are now confirmed. We were not medically surprised yet we were disappointed to see such a drastic change in such a short period of time. Riley was not surprised either to hear that her disease had progressed. She told us weeks ago she felt there would be nothing to do and then again nothing to do, however she followed with, “Then when my cancer is gone you and Dad will write about it on carepages and show His mighty power!” Our hearts hope too, but how? We pray His mighty power will be very clear for us all to see.

For Riley, medically there is very little that is proven to “help” and nothing left that can cure her. Our efforts for quantity could rob us of quality. Who do we make our choices for - Riley, ourselves or God? The way is not yet clear, but we must do what is best for Him, then Riley, and finally ourselves. We hope a choice exists that can please us all.

The only option we seem to be pursuing right now is the possibility of immunotherapy, yet that is unproven and even untested in a Wilm’s patient. Seems right up there with something God might like us to try since it has been so perfectly laid out for only Riley! As for the immunotherapy (a targeted White Blood Cell line against the protein expressed on Riley’s tumor) the physician in NY has submitted a petition to the FDA to ask for approval to use Ella’s white blood cell line for Riley. It is unusual to have a sibling with such a close immunity that this could even be possible, but Riley and Ella are nearly identical matches. I hold out hope that they match for a reason and that God doesn’t make mistakes. If the FDA approves the trial, Riley may need to face another lung surgery in hopes to remove as much cancer as possible to give the immunotherapy the best chance to work. So that puts us right back to our concern of causing her more problems than benefit as now she would be facing open lung surgery on both sides if that is even possible based on her latest CT scan.

So we give it up to God and His mighty power to decide our path. We ask that you pray for the way to be clear and to accomplish His will. We hope to hear the FDA’s response in the next week. Please pray that this path opens up smoothly if it is the Will of God.

We hold on to God and we continue to hope, yet we are very sad and hope His peace can help us face our reality. On the other hand Riley remains steady and calm. We thank Him for her peace. We rejoice in Him that she can enjoy each day unaffected by the surrounding world and her own concerns. Spending time with her can bring such peace that we don’t want her to leave us - I can only imagine how great it will feel to be with Him someday.

In closing, we hope God’s story of Riley will be yet another amazing story about the perfect Love of God.

John 9:1-3. As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life.”

Only He knows how He plans to ultimately show his work, but we trust everything has happened for that purpose and hope we can do all He expects of us as her thankful parents here on earth.

Rejoice in hope, endure in affliction, and persevere in prayer. Romans 12:12. We are persevering in prayer and we are thankful for all who pray with us. We are blessed to have a pastor from New Hope Free Will Baptist Church in Clayton NC who has felt called to organize an event allowing many churches and believers to come together and pray for and with Riley on Saturday Sept 4th at 11 am. If anyone wants to join us in prayer please feel free to join us on Saturday at New Hope Free Will Baptist Church 700 Stallings St in Clayton, NC 27520. From what we hear there may be several free will bikers coming in from Greenville SC. So hop on your Harley or jump in your minivan to join us if you can.

Holding our hands up to Him, Kirk & Kelly
Riley's Army