pastorjfreeman

Trey received 3 mg of Campath yesterday, and about an hour after it finished he began reacting. He had some chills/shivers and a fever of 103.9. He stayed fairly comfortable through it bc of all the medications, and we felt hopeful that the stronger reaction meant bad cells were dying. This morning the numbers revealed 0 lymphocytes, so yes the Campath still works (see pic below)!!! Also, we think the skin is looking better. All of this is encouraging! However, we have learned to stay off the emotional roller coaster nomatter how tempting it is to get on:). It rides up and down with the circumstances and news of the day…instead we stay anchored to our Rock, Jesus Christ, the same yesterday, today, and forever!!
Our plan going forward is Campath Tues and Friday; photopheresis Wed. and Thurs.; and, Romadepsin on Sat.
We will continue on this present course until The Lord shows us otherwise.
Trey’s spirits are good! He has been very talkative, joking with his nurses, and making us all smile.
Trey has spent about 200 days in the hospital since last Oct…. Today, Dr. Goldman asked him why he has stopped asking if he can go home… Trey said quite simply, and even with a smile “because I know I can’t.” He is one amazing little boy and I am one blessed mommy.

“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of ALL comfort, who comforts us in ALL our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.

For as we share ABUNDANTLY in Christ’s sufferings, so through Christ we share ABUNDANTLY in comfort too. If we are afflicted, it is for your comfort and salvation; and if we are comforted, it is for your comfort, which you experience when you patiently endure the same sufferings that we suffer. Our hope for you is unshaken, for we know that as you share in our sufferings, you will also share in our comfort.

For we do not want you to be unaware, brothers, of the affliction we experienced…for we were so utterly burdened beyond our strength that we despaired of life itself. Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again.

You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many.” (2 Corinthians 1:3-11)

Trey’s numbers came back a little higher today. We expect these kind of ups and downs, but we definitely don’t want to see an upward trend. He is getting day 2 of photopheresis today and another round of Campath tomorrow. We just need all these things to work if Trey is to have a chance.

Emily and I have just given this whole situation to the Lord. We are pleading daily for a miracle, but recognize God may not choose to heal this side of heaven. However, we will wear Him out by asking :-). Our two biggest prayer requests are:

1. For the Campath to work WITHOUT negatively affecting the skin;
2. For Trey’s skin to miraculously clear up!

Those two things would be all we need to move to the next transplant…they would also shock our doctors, which personally I think they all need right now. Emily and I pray our doctors see God in this situation somehow, someway. We want there to be something unexplainable to them. We truly want them to see Jehovah Rapah, the Lord our healer, reach down and touch Trey. BUT IF NOT…we will glorify God in all thing and show them Jesus through our unwavering faith!

Thank you for your prayers and standing with us. We love you!

One of Trey’s favorite things to do is copying down Scripture. He loves his Bible. He’s still on oxygen, but is slowing being weaned off. We just continue to pray and trust that God’s not through with him yet.

Trey’s lab work came back and his white blood cell count came down from 8,000 to 2,000, and his lymphocyte count came down from 85 to 4. These are both very good things. It shows us that the Campath did have some positive effect…which was a welcomed sight.

The Campath did make his skin a little more red, which is frustrating, but we are continuing with photopheresis today and tomorrow and will see if this process somehow helps. We are praying it doesn’t enflame his skin more. Trey is scheduled to receive more Campath on Friday.

After yesterday’s very difficult decisions and conversations, Emily and are feeling like we made the right decisions and are now waiting to see what comes from the medicines and treatments. We are just grateful Trey is still with us. We are savoring every moment with him and will believe until his final breath that our God is fully able to heal.

Please continue praying. I believe God is hearing the cries of His people and showing tremendous, undeserved mercy to us. I’ll will update again if something changes. Thanks, more than we can say, for praying with us.

Well…Trey pretty much sailed through the Campath. He is almost done. He did have a very mild reaction, which was what we wanted. The real test will be to see what the blood work reveals tomorrow. If his white blood cell count and lymphocyte counts are high, we will know the Campath had little impact…if they are lower, we will know it at least worked a little. We will also see what this does to his skin…which we hope helps.

If the blood work reveals no impact, it will either be because the bad cells have figured out the Campath and are resistant to it, or we didn’t give enough Campath this time. We gave a VERY small amount today since Trey has not it in over a month. So, we will just have to wait and see what happens through the night and tomorrow.

Emily and I were on our knees the entire time just praying that the Campath would work wonders this time…and that healing was flowing through Trey’s body. We will update more tomorrow once we get the blood work back and see the doctor.

I am overwhelmed by how many people are praying with us in this journey. I simply cannot say thank you enough. Today was a very emotional day, but the Lord has been here with us in a powerful way. The next few days will be of utmost importance in Trey’s life. God is holding him and has a plan…I still believe his best days are ahead of him.

Without question, where Emily and I are now, is the hardest place we’ve been yet. I am not going to go into all the details, but want to clearly express the seriousness of where Trey is.

Even though there are signs that Trey is moderately improving (skin looking better, lungs responding well, etc.), the bad cells in Trey’s body are rampant. His body is bearing a heavy burden regarding this disease. Because of this, we are at a significant crossroads. How far do we go? What drugs/treatment do we use? Etc… Every drug and every treatment at this point carries significant risks…risks that absolutely could be fatal. Emily and I want to use whatever we possibly can that will help Trey and give him the best chance to survive, but we also do not want to use anything unnecessary…and for that we need tremendous wisdom.

We have decided to use Campath again today…but even this carries more risks than ever before because there are a lot more bad cells in Trey’s blood than ever before. We do need the Campath to provoke a response, just not too violent of one. Again, this is a very delicate and specific place to be.

If the Campath does not work, there are other things we can do, but we are not sure we want to go down those paths…and we only will if we are sure they give Trey a chance to beat this disease. If they do not, we will be left without options and will then be in a place of keeping Trey comfortable until the Lord calls him home.

So, that’s where we are. We are still holding out hope and will hold out hope until his final breath for the Lord to intervene and heal Trey. With God all things are possible! But, as I said in an earlier post today…BUT IF NOT…we will know God was finished with Trey on earth and wanted him to be with Him forever in heaven.

So…please pray! We are asking for a miracle and for lots of extra mercy and wisdom. Our God is in control and He is holding Trey!!!

“He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again (2 Corinthians 1:10).”

My associate pastor and dear friend reminded me of the passage below yesterday. If you’re familiar with the Bible, you know the story of Shadrach, Meshach, and Abednego and how they, and all the people in Babylon, were being forced to bow down and worship a false god/golden image set up by the king. Whoever did not bow, would be killed by being thrown into a fiery furnace.

Well, these three godly men did not bow and were brought before King Nebuchadnezzar. He gave them one final opportunity to bow and told them if they didn’t, they would be killed. Here is how these godly men responded to the king:

“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 or worship the golden image that you have set up (Daniel 3:17-18).”

As my friend reminded me yesterday, there are three key words in those verses, “BUT IF NOT…” These men knew and trusted their God, the one true God, completely, but also knew that if He chose not to deliver them on earth, that He would deliver them eternally. So, it wasn’t really a matter of “if,” but “how” God would chose to deliver them. The point was…they trusted their God no matter what.

This is where Emily and I are today…asking God for a miracle for Trey here, but also saying, “BUT IF NOT,” we will worship and serve God no matter what happens. Here is a passage of Scripture my wife shared with me this morning and has written on our white board in Trey’s room for all to see:

“God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying.
There shall be no more pain, for the former things have passed away.”
Then HE who sat on the throne said, “BEHOLD, I MAKE ALL THINGS NEW.”
Rev. 21:4-5

We know our God, one way or another, will make all things new!

I’ll update more later. Keep praying. We love you!

Trey’s lungs have responded nicely to treatment. That is a huge praise the Lord. He is still on a high pressured oxygen machine called a Vapotherm, but they continue to bring his support level down and he is breathing at 99-100% saturation. That is very good!!!

Because he’s been doing so well, he was able to move out of the PICU and back into his room today. That was a huge lift to his morale and psyche. We are so grateful to be back in his room.

So, tomorrow is a big day though. We are going to begin trying Campath again. It has been 4 weeks since he last received Campath. When we used the Campath, it did an excellent job controlling the amount of bad cells in the blood, but seemed to be an aggravate to his skin. However, he still had his spleen at that time and we don’t really know if the skin problems were a result of the Campath or if they would have happened any way. Currently, his skin looks better than it has in weeks!!! We give God great glory for this!!! But we are naturally concerned the Campath might aggravate his skin again. But we have to try it because it does such a good job keeping the cells suppressed in the blood. So, we will start with a small does tomorrow and see how he responds.

Please pray he handles this well. Please pray his lungs endure. Please pray his blood pressure stays strong. Please pray the Campath will actually help and not hurt his skin. Please pray the Campath works!!!

We will update everyone tomorrow. Oh Lord heal…that is our prayer!!!