pastorjfreeman

Trey prayed the sweetest prayer tonight and we had the best talk about the Lord. As he prayed, my heart just melted. His prayer was so real and genuine and I just know it must hafe blessed God’s heart. I was asking God…Lord, please hear this prayer and answer Trey…please Lord!

Trey’s Campath is done for today. He definitely reacted this time, which as I have said before, we want a reaction…just not too much of one!

His temp and heart rate got pretty high and his blood pressure was teetering on the low side…but he endured and is recovering now. We trying to control the temp and blood pressure, and waiting for the heart rate to come down. I was a little worried about his oxygen, but it stood strong during the treatment as well.

I’m just praying we’ve seen the worst of the reaction. Trey has been known to react more later…which I don’t want. Keep praying he remains stable and has a good evening. Thanks for the prayers today. It will be very interesting to see what the blood work says tomorrow. I’ll update again tomorrow, unless something urgent pops up and we need prayer.

Trey and I had a long night. It wasn’t that anything bad happened, it was just that he couldn’t get comfortable. I don’t know how much he slept, but I know I slept 2-3 hours. Any way, we woke up and he was grumpy…so was I though. We’ve both rallied a little bit and he’s about to get Campath.

I’m putting this update out because Trey’s numbers came back higher today…both his white blood cell count and lymphocyte count…his platelets remain low though. We REALLY need the Campath to work. In fact, we may go back to doing it three times a week, at a potentially higher dose, if Trey’s body can handle it. We will see what his labs say tomorrow. Please pray Trey handles Campath well today and please pray it works exceptionally well on him.

You know how much we need this to work…so all your prayers are appreciated. Oh Lord, breathe life into Trey now! We love you Lord!

“do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus (Philippians 4:6-7).”

When I arrived on Monday morning, Trey was very sick. It was clear he was not breathing well. We were very close to having to put him on a ventilator. It was a scary and emotional day.

Since Monday afternoon though, Trey has rallied once again. He just will not give up or give in. God is giving him tremendous strength and in my heart, I just believe the Lord is not through yet. We pray daily for miracles, and this week I believe I saw a few. I asked one our doctors this week what he believed Trey’s chances were of turning around (medically speaking)…and he said, “Honestly, I don’t know because we are in such unchartered waters, but if I was pressed to answer, I’d say less than 30%.” I said, “Well that just increased my prayer life by 70%.”

As I have said before, Trey’s back is against the wall…he’s in the fight of his life…and I am just praying and believing that the Lord, His mighty warrior, will fight on his behalf. Truly, our only hope is in God and I’m praying He reveals
Himself mightily.

So, the challenge for us is this…while Trey’s skin is looking better on the outside, we have to hope the cells are being more controlled on the inside. His skin has not looked this good in a few months, but we need what’s going on inside of him to be resolved. The Lord seems to be answering our prayer regarding the skin, although it still needs to keep clearing, but we now need the abnormal cells to stay suppressed in his blood stream so we can get to the next transplant. We need the Campath to really work! However, wouldn’t it be awesome if we didn’t even need the next transplant…if God just healed Trey!!! That’s what I’m asking Him for and I know God is able to deliver.

I’ve had some really good days with Trey and we’ve come a long way since Monday. He’s getting Campath again tomorrow and Romidepsin on Saturday. We are praying he stays free on any infection, that his lungs keep healing, and that he just gets better every day. I would love for our doctors to watch Trey keep getting better and completely be unable to explain it. Oh Lord, may it be!!! May Your name be made great through the life of my son.

Any way, please keep praying…I know you are…but we just need you to not stop. I was to be like the persistent widow and just keep asking and asking and asking…believing with all I have that God is about to do the miraculous. Anyone who knows me, knows my favorite verse of all time is 2 Corinthians 4:18 which says, “SO WE FIX OUR EYES, NOT ON WHAG WE CAN SEE, BUT ON WHAT WE CANNOT SEE; FOR WHAT IS SEEN IS TEMPORARY AND WHAT IS UNSEEN IS ETERNAL.” I am praying than we will keep seeing the unseen as we walk by faith.

Oh Lord, we humbly ask for You to absolutely wipe this disease away from Trey…breath life into him…and may his life be an incredible testimony of Your awesome power! On Lord, may it be!!!

I’m trying not to make too much of this day, but it was a much needed breath of fresh air. We truly are on a roller coaster with Trey and never know what each day brings…yesterday had some lows and today had some highs!

First off, Trey slept great last night…best nights sleep in weeks (which means I slept good too). Then he woke up in a great mood, full of life, and just looked better. His blood counts looked good and his lungs are sounding a little better. The pulmonologist came by and thought Trey looked better too. Trey also had an ECHO done of his heart today, just to make sure there is nothing going on there.

Trey also wanted to watch TV this morning, play with his toys, and he even asked for something to eat and drink (something he’s not done in about a week). I just couldn’t believe the change from one day to the next…I was and am so grateful!!! I am giving ALL glory to God!!! His skin also continues to improve little by little. He still has a long way to go, but I feel for the first time it’s headed in the right direction. Again, I’m trying not to make too much of all this, but I’m praying this is the first day of the rest of Trey’s life…may the healing begin today and may he never look back. Oh Lord, may it be!

Trey also received Campath today and handled it very well. As always, we will just have to see what the blood work reveals. He did not have much of a reaction today, so we always hope the bad cells have not developed a resistance to the Campath…again, we will just have to wait and see. We may just need to give a higher dose of Campath on Friday if the blood work reveals too little of a response.

At this point we won’t do another flow cytometry test until next Monday. So, Trey will get photopheresis tomorrow and Thursday, Campath on Friday, Romidepsin (most likely on Saturday, IVIG on Sunday and a day of rest on Monday. We are desperately praying for all these things to work like we know they can. Please pray for tremendous wisdom for our doctors as they evaluate Trey and make decisions about what treatments to use for him.

I’m praying for another restful night for Trey and hope he wakes up as good tomorrow as he did today. Please join me in that prayer.

One of the hardest parts for me is knowing how far to push Trey. There are some things he just does not want to do. I’m sure the nurses think I’m a push over, but it’s just hard getting on to Trey about anything. I hate that he has to go through this all and I try to pick my battles with him carefully. I’m just grateful for each day I get with him and pray I can have wisdom in how to parent him during these difficult days. I assure you…it’s not easy.

Any way, thanks for your prayers. Only God knows what we will wake up to tomorrow…but I would be so glad it tomorrow was much like today.

So…I’m back with Trey. And when I got here, he decided to give me an interesting welcome back. When I arrived at the hospital this morning, Trey was having trouble with his lungs again. He was requiring more and more oxygen help…and every time he got worked up about something, his saturation levels would go down into the 80’s. This was obviously concerning, considering the amount of oxygen assistance he was already getting.

Things were getting serious enough though that if he didn’t turn around soon, he was going to be heading down to the PICU to be intubated. Had this happened, it would have been a major set back for Trey and always possibly something he would not have come out of. Thankfully, he began to rebound a little bit. One of the pulmanologist in the hospital came to see Trey and feels that his lungs are pretty clear, but the lower part of his lungs are just needing a little help. So, we have begun some rigorous breathing treatments to help. I would add that Trey is not too fond of these treatments, but is being a trooper and at least he has rebounded for the moment. We give God glory for this.

He is still receiving significant oxygen help, but he is staying up in the 99-100 saturation range right now. He, of course, needs to come off the oxygen altogether, but we plan to slowly wean him to give his lungs time to heal like they need to.

Trey is supposed to get Campath again tomorrow and Friday, and his other treatments will be on Wed, Thurs, and Sat. Needless to say, every day is extremely important with Trey. We are praying desperately for God’s healing hand to reach down and touch Trey and we still believe his best days are ahead. God is taking great care of Trey and we know Trey is in His hands.

Last night at church, I shared a very personal side of what God has been doing in our family. It was a heart wrenching time for me, but I feel the Lord truly blessed and my church family ministered to me greatly. Over 400 people were in attendance, and hundreds were crying out to God, many weeping with me, for God to heal Trey. It was a time I will never forget. I wish Trey could see how many people love him and are praying for him. I sure love my church family and all my friends/family who have reached out to us and who are praying with and for us.

Please keep us in your prayers. Trey is deep in the woods and has a long way to go. God is our Guide though and we know He will lead us out in His time. We FULLY trust Him. Thanks for journeying with us…keep calling out to the Father on Trey’s behalf.

I will add one final thing…Trey’s skin is looking better…and we pray it just keeps on healing! All glory to God for that.

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!