blog is moving

Hey Everyone.  Please get the latest updates on Pearce at this site from now on:

https://www.caringbridge.org/visit/pearceschallenge

Thank you!

Pearce's vision check-up

This morning Pearce had an appointment with the neuro-opthalmalogist (do you all know how hard it is to spell opthalmalogist?? Still have a hard time spelling it correctly after typing it 1,000 times over the past two weeks).  Anyway, we were very encouraged.  The doctor said that Pearce's eyesight is improving and the eyes are healing nicely.  He also found that some fluid had leaked from the optic nerve (due to the severe swelling) and run over the retina.  He thought it was likely that it is this fluid that has caused the deterioration of Pearce's vision rather than damage to the optic nerve.  This is really good news because this fluid usually dissipates and then the vision is restored while nerves have a much harder time healing.

So, we are very hopeful that Pearce's vision will come back completely!  It's hard to see him struggle to look us in the eyes and to find his way around but, as I wrote, we are optimistic that it won't be long.

One thing both Amy and I had a hard time doing during the appointment was get excited.  We feel cautious and afraid to get our hopes up.  Little during this journey has gone exactly how the doctors thought it would so we are a bit suspicious.  We don't want to be this way.  We want to "always hope." (1 Cor 13:7).  What a challenge though!  It seems so much safer and wiser to be skeptical...but also depressing.  I have no doubt we'll be given many more opportunities to work on this and figure out how to choose hope even when it feels foolish and risky.

A good friend today said that she has been faithfully praying and that she is like Aaron holding up Moses' arms.  That's absolutely how we have felt.  At times we've been too exhausted to pray anymore and we've not know what to pray.  In these moments, it's been amazing to know that we have had you all interceding on our behalf along with the Spirit who "intercedes for God's people in accordance with the will of God." (Rom 8:27).  Thank you!

still home...hooray!

We had a good night and Pearce is feeling well.  He has been working for a few hours now on a new lego set.  It's a bit more challenging with the reduction of his eyesight but he's still enjoying the building and we are so grateful that he's able to do so.

We are hoping and praying for some calm days now and the opportunity to process all that's happened in the last 11 days.  Holy moly!

We can't thank you all enough...seriously!

The latest

 Hello family and friends.  Sorry for the delay in posting an update.

 Pearce was discharged from the hospital Monday.  We were thrilled to be going home after our second stay in the hospital. Things seem to be going much better than after the first surgery. But then, unfortunately, yesterday evening Pearce began to complain about the eyesight in his good eye. So we jumped on this and drove back from o the ER to get it checked.  The doctors checked his vision and it was stable. Praise God! Then they also checked that his shunt was working properly and it was. The pressure in his brain has come down to a normal level.  Out of an abundance of caution, they decided to keep Pearce at the hospital for one more night so they could check his vision again in the morning. We are waiting on that check up but it seems that Pearce's eyes are doing even better. We are so grateful!!   After being told yesterday morning that Pearce is legally blind and it's very uncertain how much vision he will get back, we are thrilled that he is seeing better!! God is answering the prayers of restored vision.

 Amy and I have some fried nerves after the past 2 weeks but we are trying to rest in God's sovereignty and goodness even when all of this really doesn't make any sense to us.

We continue to be deeply humbled by all of the generosity and support you all have shown us! Thank you so much for your prayers and changing of schedules and visits and meals and words of encouragement and on and on!!

Post surgery

We are so grateful to be settled into a room in the hospital! Pearce is doing well...ready to eat his customary post op meal of blueberry pancakes. But with some stomach pain, we are taking it slowly. Still reluctant to open his eyes but we'll work on that.

We are ready to have some stability but we know our firm foundation is God through whatever trial we face.

This is a day to celebrate HOPE and that death didn't have the final say! There's no greater gift we can receive than the hope of one day seeing God face to face and having all of our tears wiped away and all things being restored...no more shunts.

Done

Pearce is done with surgery and we will go back to see him in a few minutes. Praise God!

Please pray now for Pearce's vision to recover 100%! He lost a lot of vision the past two days.

Thank you everyone for your love and support!

Shunt surgery

Happy Easter! Please pray for Pearce's surgery this morning at 7:00 to implant a shunt that will allow the brain fluid to drain out of his brain and alleviate the high pressure. We are praying this will be the final surgery and finally provide relief to the hydrocephalus.

Also, please keep praying for P's vision to return.

Thank you everyone!

Through surgery

Praise God, Pearce did well in surgery.  They only operated on his right eye to relieve the pressure. Please pray that his intercranial pressure comes down into normal range tonight. If it does not, we will have to put in a shunt tomorrow...another surgery. :(

 We can't wait to get back now to see him in recovery.   Easter in the hospital isn't our preference but it's what God has and we will all be better for it.

Thank you for your prayers, support and concern!!

Love,
Brian and Amy and Pearce

In surgery now

Thank you for praying!

Another surgery

Pearce has lost vision from Wednesday to today. The doctors aren't sure that the pressure in his brain has normalized. They think it probably has but aren't sure. So they have to put a sensor in Pearce's brain to check. They will do this around 3:30 today. At the same time, they will operate on his right eye to try and alleviate the pressure on his optic nerve and protect as much vision as they can. It sounds like this procedure can be risky. 

We don't feel up for another surgery but that's what is on our path. Please pray that the pressures are at normal levels and that the eye surgery is a success!!  Or that Jesus just heals Pearce now and astounds the doctors. 

Back to the ER (because the clinics are closed on Saturday) to have Pearce's eyesight checked along with his head and pain. Prayers are appreciated.

at home

Hi Friends,
I know Amy said she was hoping the update from Wednesday would be the last entry from this trial we faced with Pearce.  But unfortunately, I think that was a little premature.  We would love for you all to please continue praying.

We are home now and we are very happy that we are.  However, this meant we got onto a new emotional roller coaster.  We have hours where Pearce is feeling really good and seems much better than we have seen him in two weeks and then a symptom pops up and he doesn't feel great and we get quite worried.

The bottom line is that we're not completely out of the woods.  So, we do ask that you would continue to pray for Pearce (and us).  Pray that the surgery that was done on Tuesday will be a success and work (this is still yet to be seen although there is a very high success rate for this type of procedure).  Pray that Amy and I have wisdom about what to pay attention to and what we can dismiss.  Pray that Pearce's sight in his right eye would come back to 100% (this is a new thing we became aware of today).

We continue to be very grateful for your support and prayers!  Thank you!

Brian and Amy
Eph 3:20-21

Wednesday evening

Today was an absolutely incredible day . . . we are home!!! When I (Amy) think back to just a few nights ago, that wasn't even a thought in my mind. We were told to prepare for a long and difficult journey. And yet, our God is able. Here we are. Pearce is sleeping soundly in his bed just a mere 36 hours after brain surgery to relieve his hydrocephalus. His spirits are great and he is happy to be at home and working on his new Lego sets that he received while in the hospital. His sense of humor is back . . . he said to us on the way home from the hospital tonight, "Just so you know, I was really only in this for all of the presents." Oh to hear that sweet voice in the back seat and to look in my side mirror as Brian drove us home and to see the sun on his face was one of the sweetest sights I have ever seen.

We stand in awe of our God. He has spared our son. He has heard all of your prayers as you literally banged on the doors of heaven begging God for a miracle. Thank you. From the bottom of our hearts, thank you dear friends. He has heard. He has moved. And we are beside ourselves with gratefulness and thankfulness.

Monday night, the night before Pearce's surgery was scary. We had just met with the doctor and as Brian told you all, we were made aware of the risks of the surgery. I heard the doctor say the word "catastrophic" if a vital artery in the brain was punctured, and I heard nothing else from that point on.  My mind swirled with the possibility of losing Pearce once again. I felt like after a full 24 hours of feeling hopeful, I was once again swallowed by the fear and confusion of the unknown. As we tried to process what we had heard later in Pearce's hospital room, I kept telling God and Brian, "but this is my son." "I love this boy more than anything.""I would do absolutely anything to take this from him." And God whispered to my heart, "That is how much I love my Son."

My heart broke all over again as I thought of God willingly sending his Son, Jesus Christ, to die. And yet, God knew He would do that from the very beginning. Early on in our conversations about Pearce's tumor, I told Brian that I couldn't do it. I couldn't be the mom of a child that had a brain tumor . . . that might die a slow, painful death. I couldn't live through losing one of our children. He held me and told me that I had to. There was no choice. This was a road we had to walk down. We had to do it. He said that if anyone had told us about the pain and heartache that would befall us before we became parents, we would never have chosen to do it. He is right. And yet, God did it. God saw the desperate situation of man - separated from Himself because of sin. And He sent his own Son to be born, to live and to die for every one of us. Willingly, because of His great love for us, He did it.

Throughout my life as a believer, I have prayed to know the full weight and redemption of Easter. As Christians, it is a day when we reflect on Jesus' painful and willing death on the cross, and celebrate His resurrection and triumph over death. This Easter week, I feel like I can catch only a glimpse of the sadness, the heartbreak, the pain of God's decision to let His own Son die for us. He of course is God, and so I don't have his mind, heart, wisdom and I don't want to compare myself to Him at all, but I feel the weight of Easter like I never have before. My desperation as a mother to have my son spared, to take his tumor out and put it into my own brain, to end his pain and fear . . . it is only a fraction of what God must have felt at the thought of using the death of His Son to reconcile us to Himself. It is both humbling and sobering. And again, I stand in awe of our awesome Creator and Father. The one who gave Everything so that we might have life . . . that is love.

Daniel 3:16-18
"Shadrach, Meshach, and Abednego answered and said to the king,
'O Nebuchadnezzar, we have no need to answer you in this matter. If this be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of your hand, O king. But if not, be it known to you, O king, that we will not serve your gods . . . '"

Our friend paraphrased this so beautifully when she said,
"God is able to deliver us from this fire, BUT IF NOT, we still will not serve your god."

Our God is able to completely heal Pearce, but if He does not, may we all have the grace to respond as Shadrach, Meshach and Abednego did.

We pray that we don't have to update this blog in the future, that after today, this is the last that you hear from us. Please continue to pray with us that Pearce's surgery to resolve his hydrocephalus is a success. Pray that when the neuro-oncologist reviews his MRI in three months that his tumor is completely gone, and that Pearce will live the rest of his life as a normal little boy, young man and one day a father and grandfather . . . and to God be ALL of the glory. Thank you all for your prayers, visits, calls, texts, emails, presents for Pearce, and providing for our family in the way of childcare, meals and errands. We are overwhelmed by your generousness, your thoughtfulness and your kindness. We love you all.

Love,
Brian and Amy

A good day.

Last night it was very difficult to sleep.  We were all a bit worried about the surgery this morning.  Though the operation was a low risk operation according to the neurosurgeon, when he shared the risks associated with the procedure it didn't sound very "low risk" to us.  There was the potential of a "catastrophic" complication.

This made us all the more grateful to be the first surgery of the day at 7:45 am.  My dad Bruce made it to our room well before Pearce was carted down to the OR.  We spent some time praying and listening to praise music.  Pearce requested to listen to "Mercy Tree" by Lacy Strum.  We asked him if he wanted to pray too and he did.  He kicked off his prayer..."Dear Jesus, we thank you for this wonderful day..."  I was so proud of him.

He was afraid, like we all were, but talked about David probably being afraid when he faced Goliath and yet he still walked into the battle.

Watching him drift off to sleep after getting some anesthesia was quite scary.  What if that's the last time we hold hands and he looks us in the eyes and we can say we love him and are proud of him?  Yikes!

But, by God's grace, the procedure went much faster than we anticipated and the surgeon came marching out to us with a smile on his face.  We were ecstatic.

After the surgery Pearce did just great.  He didn't even nap this afternoon.  He ate like a champ and never felt nauseous.  He is taking some pain meds to help with the pain of the incision and the small part of his skull that they had to remove.  We are hopeful he will be able to go home tomorrow.

Now, we will tackle the challenge of entrusting Pearce to God every day, every week, etc.  The tumor is still in his brain.  We will be on alert for new symptoms and we will do regular MRI's.  But, we pray that God would remove the tumor or at the very least keep it from ever growing and causing more problems.

May this tumor be a blessing.  May it remind us that life is short and that our tomorrow's aren't guaranteed for us.  We need to put the first things first in our lives...bless, love, serve, listen, be present, and walk humbly.  We've seen so many of you demonstrate these virtues since we heard the horrible news on Saturday night.  We are humbled and grateful by the quick, loving and sacrificial response of all of you.  We love you!

Pearce is done with surgery. He did great!! We should get to see him in 30 minutes. Praise God! Thank you for praying!!

surgery time change

Dear Family and Friends, Thank you again for all of your support, love, generosity and kindness. We have been overwhelmed by it. Early today we were feeling pretty good about where things stood with Pearce. The doctors feel that the tumor is not aggressive and likely will not require proactive treatment in the future (i.e. chemotherapy or radiation or surgery) should it show no signs of growth or change. Now, however, we are facing brain surgery tomorrow morning at 7:45 am. Hearing the details of the surgery and the risks was sobering. We are grateful for the temporary relief we felt last night and earlier today but now we're in another anxious time. The surgery remains "a low risk surgery" according to the neurosurgeon and yet there is potential that if something goes wrong, it would be very very serious. So, we continue to ask for prayer tomorrow morning in particular. May God protect Pearce and guide every step of the surgery, blessing the team of doctors and nurses. He is in control. Brian and Amy

Short follow-up

Hi Everyone. We had a good night of much needed rest. We are grateful. We have seen the neurosurgeon this morning and he confirmed that it appears the tumor is of the type that can just be watched. He said there was no easy way to get a biopsy of it to know even more about it, so they will do frequent check-ups to make sure it's not growing/changing. The check-ups will be spaced out more and more as they know more about how the tumor is behaving. Having more history watching it gives them confidence of what it's going to do. Our next hurdle will be tomorrow when Pearce will undergo an operation where they will send a scope into his brain and drill a little hole that will alleviate the current increased pressure in his cranium. It's our understanding that this will be a permanent solution to the hydrocephalus. This has been an ordeal! It has confirmed to me (Brian) how frail we all are. In one moment our lives can easily change dramatically. Saturday was a pretty normal day (albeit Pearce wasn't feeling very well) and then that evening we are with him in the ER finding out that he has a brain tumor. Our minds raced and we thought our amazing son was going to die. There's no way to be prepared for news like that. We cried out for God to spare him and for a way through this (along with all of you). Ultimately, we aren't in control of our lives. God is. And God is good and faithful. We can walk each day in humble dependence and joy unafraid of what may pass...even if it's the worse thing we could imagine. Thanks everyone for your amazing support. We are blown away (and humbled by it)!

Praise God...looks like least harmful tumor! Hoping we will just be able to watch it carefully going forward. Not sure that's all we need to do but pretty confident!! They still need to alleviate the pressure with an operation on Tuesday. We will have a settled plan tomorrow after the neurologists and oncologists talk. Thank you everyone so much for your kindness and support through this. It brings tears to our eyes.

Through the MRI successfully. Now more waiting until we find out what the MRI showed. Please pray for good results.

1 hr 45 minutes now into MRI. Hoping it will wrap up in 15 minutes. Hoping to have more answers this evening.

Pearce p1

We just met with the pediatric neurologist. The blood work they did on Pearce ruled out some types of tumors that would require chemotherapy and/or radiation. The blood work doesn't rule out all tumors that could require chemotherapy or radiation but some. So, regardless, we find that encouraging. Pearce will have an MRI later today which should tell us if the mass is a different type of tumor which could also require intervention (chemotherapy, radiation or possibly surgery). We won't know the results from the MRI until tomorrow. Ugh. Regardless of the MRI results, they neurologist will operate on Pearce on Tuesday to create a byway for the fluid in his brain. The lack of flow due to the mass is causing his headaches and back pain now. They need to alleviate the intracranial hypertension. We were really encouraged that the doctor said it very possible that they will alleviate that pressure and then just watch the mass with regular MRIs. Again, that's depending on what the MRI shows. Thank you again for your prayers!