Yesterdays blood test came back good to my surprise. You would think there would have been some relief after waiting 6 hrs for the nurse to call, but not so much. You see, I thought Carter looked bad yesterday and I was kind of expecting bad results. The lab had even given me a bracelet should I have to come back for transfusion. Now don't get me wrong, I was grateful for a good report, but I couldn't seem to "get happy." Yesterday was probably the hardest day since this all started. Going to the lab weekly is starting to take it's toll, especially when the nurses can't ever seem to find Carter's veins. And I have come to the conclusion that I cannot figure this out. When I think he looks good his numbers drop and when I think he looks bad his numbers improve. I just want to see consistent improvement instead of this teeter tottering thing. There were also some other things going on yesterday that kept me in a "funk." I defintely wasn't finding joy despite of my circumstances and I wasn't trusting God as I should.

Then came this morning. I met a friend to exercise and arrived before her. I sat in the car praying and this song came on. It was perfect. The words are kind of repetitive when typed out, but I didn't notice that at all this morning. I need to be reminded and reminded and reminded again. Repetition is good (most of the time).

Verse 1
I'm castin my cares aside. I'm leaving my past behind.
I'm setting my heart and mind on You, Jesus.
I'm reaching my hands to Yours, believing there is so much more,
Knowing that all You have in store for me is good, it's good.

Chorus
Today is the day You have made, I will rejoice and be glad in it.
Today is the day You have made, I will rejoice and be glad in it.
And I won't worry about tomorrow; I'm trusting in what you say.
Today is the day

Verse 2
I'm putting my fears aside. I'm leaving my doubts behind.
I'm giving my hopes and dreams to You, Jesus.
I'm reaching my hands to Yours, believing there is so much more,
Knowing that all You have in store for me is good, it's good.

Bridge
I will stand upon Your truth.
And all my days, I'll live for You.
I will stand upon Your truth.
And all my days, I'll live for You.

Final Chorus
Today is the day You have made, I will rejoice and be glad in it.
Today is the day You have made, I will rejoice and be glad in it.
And I won't worry about tomorrow. I'm giving you my fears and sorrows.
Where You lead me, I will follow; I'm trusting in what you say.
Today is the day.

Isn't that good! It's like God was speaking to me right there in the car through the radio. When I got home, 2 of my great friends had posted entries that had to be written just for me :). One was verses all on waiting http://www.daughterofdelight.blogspot.com/ and the other was about trials and how God sovereignly places them in our lives for our good and His glory. It was sooo incredible I need to read it again and again - REPETITION :). You can find it here: http://www.acupofgracegcc.blogspot.com/.

My husband just got home and I immediately asked him to play the song I had heard this morning :). I had the music printed off and waiting on the piano. As I finish typing this, he is in there practing. He is incredible and is so good to me.

We go back on Friday. I will try to update as soon as I can. Here are the numbers from yesterday: hemoglobin went up from a 6.1 to a 7.5, white blood cells up from 4.09 to 4.99, red blood cells up from a 1.8 to a 2.2. All these numbers are still below the acceptable low, but the improvement is encouraging. The interesting thing is that the retic dropped. It was 4.9 and now it is 4.7.

Lord, I fail so many times. The fact that you still love me is amazing! Thank you for the work that you are doing in my life.

As I type this, Carter is in his bed crying. I think it is partly because I put him to bed, but mostly because when I prayed I asked God to take the pain away and to comfort him tomorrow at his 4th blood draw. As soon as I said amen the tears and the "I don't want to go to the train doctor" started. Up until now, every lab experience has been awful! Last Wed he ended up being "stuck" twice within 30 min. It is starting to become very difficult for me.

There was a good and a bad to last weeks visit. I haven't posted "counts" since the beginning, but from here forward I think I will only to help me keep track. When Carter initially went into the hospital, 11/15, his hemoglobin was at a 5 and his retic was at a 0 (which means he wasn't producing red blood cells).

Retic is an abbreviation for recticulocyte. A reticulocyte count is a blood test that measures how fast red blood cells called reticulocytes are made by the bone marrow and released into the blood. Reticulocytes are in the blood for about 2 days before developing into mature red blood cells.

After transfusion, 11/16, his hemoglobin was a 8.3 (suppose to be between 12 and 16).

11/20, his hemoglobin dropped to a 7.5. His red blood cell count was a 2.3 (suppose to be between 3.9 and 5.3). His retic was 1.1.

11/26, almost everything stayed the same with exception to his retic, which rose to 2.1.

12/03, hemoglobin dropped to 6.1, red blood cell count dropped to 1.8, retic 4.9.

Although, numbers are dropping, because the retic is going up the doctor has decided not to transfuse again at this time. A high reticulocyte count means more red blood cells are being made by the bone marrow which is a good thing. I believe this is a sign we are on the road to recovery, although, it may be slow. The doctor believes Carter is following the "classic course" for TEC. He said anything else wouldn't clinically make sense. This is good news since TEC is something that will pass. I don't think they will do a bone marrow biopsy unless the retic stops improving.

I will try to update tomorrow. In the meantime, please continue to pray for my little man and please pray for me. Thanks so much!

Well, today is our 3rd appt since Carter's release from Wolfson's. One of the first things out of his mouth this morning was, "I don't want to go to the train doctor" - there is a big train display in the lobby of Nemours that he loves to look at. I'm hoping they can just prick his finger today instead of withdrawing blood via a needle. From the way he looks, I think his blood counts will be up. I hope I'm right and not just getting used to his paleness. I just read that Nemours will be closed this morning due to a loss of power caused by a main electrical transformer. All appts scheduled for this morning will have to be rescheduled. I am so thankful Carter's appt is for this afternoon. I have already been waiting a week. I found this quote a long time ago and threw it in a drawer. I happened to run across it the other day. I am not even sure who it is from but it was so timely for me. Hope it blesses you too!

"Waiting on God isn't about the suspension of meaning and purpose. It's part of the meaning and purpose that God has brought into my life. Waiting on God isn't to be viewed as an obstruction in the way of the plan. Waiting is an essential part of the plan. For the child of God, waiting isn't simply about what I'll receive at the end of my wait. No, waiting is much more purposeful, efficient, and practical than that. Waiting is fundamentally about what I'll become as I wait. God is using the wait to do in and through me exactly what He's promised. Through the wait He's changing me. By means of the wait He's altering the fabric of my thoughts and desires. Through the wait He's causing me to see and experience new things about Him and His kingdom. And all of this sharpens me, enabling me to be a more useful tool in His redemptive hands."

An update to come..............

A quick update........

I took Carter for his blood work this morning. Unfortunately, our "magic cream" didn't work too well. They were unable to get blood from his arm again. They stuck his hand and got blood at turtle speed. It was a very traumatic experience.

The nurse called 3 1/2 hrs later (my heart skipped a beat everytime the phone rang during this wait) and said that Carter's blood count had not dropped, but it hadn't improved either. She said it was almost scary how exactly the same the results were. She knows, however, that the lab didn't "mess up" because there were a few differences. Good news is that his reticulocyte count has gone up a point which means his body is working harder trying to produce more red cells. It is also good that we didn't have to go the hospital today for another transfusion. That would have put a damper on Thanksgiving. Now we have even more to be thankful for! His next appt is scheduled for Wed 12/3 at 1:40. We will be going in about an hour before for more blood work. His nurse said we can just request a finger prick from now on since the needle isn't working to well. This was a relief. Should things stay the same or worsen, they probably will start talking about a bone marrow test. Thanks so much for your continued prayers. Hope everyone has a great Thanksgiving. God is so good!

Off to the Emergency Room we go....

Well, today was another exciting, eventful day for us. This morning I was in the back of the house when I heard Carter screaming and Tyler yelling, "Carter's bleeding." I immediately ran towards the play room/school room where they were and was met by Carter in the kitchen. Behind him was a trail of blood. From what I could tell, he fell off the couch and stabbed himself in the forehead with the colored pencil he was holding. Because it was a head wound, it was bleeding pretty good. Once I got it under control, I decided to take him to the ER. The puncture wound wasn't that bad, but I thought if I just used a band-aid it would leave a pretty nasty scar. I was out of band-aids (I had just used them to decorate my brothers truck last Fri, of course) so I made one. I folded up a tiny piece of paper towel and I taped it across his head with Scotch tape :) A homemade band-aid. My creation controlled the bledding while we rode to the hospital. I took him to Baptist South because they are usually faster. They used dermabond which is like a glue. We were in and out fairly quickly. Carter is doing fine. You would not even know it happened by the way he is acting. This is wound # 3 on the face.

I'm doing good, but this morning I was a little frazzled. "I'm done" was my attitude. When I got in the car, I heard the following song. I think it was written as if a mom were talking to her child, but it ministered to me in a different way. I kept thinking of how my Father takes care of me and how I am safe in him. I calmed down.

Clouds will rage
And storms will race in, but you will be safe in my arms
Rains will pour down, waves will crash all around
But you will be safe in my arms

God is so good to keep sending reminders to us. Later in the day, I was teaching Tyler about Abraham. We read from The Child's Story Bible and from Gen 15. God Told Abram He was his shield and to not be afraid. This was a good reminder to me that God stays with us during difficult times. Abram's faith was also an example to me. For nothing is impossible to God. Brenda also called and reminded me that God will not give us more than we can handle.

Please pray as we are going for our 2nd blood test tomorrow. Also, I believe my husband is feeling a bit overwhelmed right now. He has decided to teach piano Mon, Tues, and Thurs night to help us financially, but it seems the bills just keep coming. We are also facing some insurance issues with the kids that obviously need to be resolved very quickly. Love you all!

long awaited phone call

I just spoke with Dr. Perszyk, Carter's genetics doctor. I've been waiting since last Wed. He said the drop we saw Thursday after Carter's blood draw is pretty common after transfusion. He suggested giving Carter more folic acid either through foods or pills that I could crush up and mix with food. This would help his red blood cells. He said with cancer your platelet count is usually bad and your white cell count is way up. This is not the case for Carter. Good news! He said it does look like an isolated red blood cell problem. If the red blood cell production has in fact stopped because of a viral infection we could still be looking at months until recovery. This depends on how long the virus has already been in his body. His counts could drop more before they get better. How quickly and drastically they drop though is what to be watchful for. If blood test start to show something else "fishy" than more tests will be run. He doesn't think Carter has an iron deficiency because the red blood cell size is pretty normal and if he were lacking iron it wouldn't be. I told him Carter has had loose stools for some time now (he went diarrhea 4 times Sat) and he said it could be related to the virus, if that's what's going on, or he could have a problem absorbing nutrients. He mentioned Celiac Disease. I did a quick google on this and read Celiac Disease is one of the most frequent causes of malabsorption during childhood. Malabsorption can result in other problems such as delayed growth and short stature. I think Carter fits into the delayed growth and short stature category, but I'm not sure this is what he has because with Celiac Disease you usually have chronic diarrhea and I wouldn't say Carter has a chronic problem yet. All this will be ironed out as blood work gets done. And in regards to blood work, Dr. Perszyk told me to call my pediatrician because there is something called Emla cream that you put on your child before blood draw. It warms up the area (makes the draw easier) and acts as a numbing agent. He said Wed morning should be an "OUCHLESS" draw for Carter. HOORAY! PRAISE GOD!

This is a waiting game that can go on into the new year. As time goes, more will be found out. All in God's timing, right! Our conversation lasted almost 40 min and I tried to write down and retain what I could. He is a really smart man. I kind of feel like I'm spinning. I keep thinking I missed something or forgot something. I know I did, but am trying to trust I remembered what I needed to. I need to figure out a way to record things - any ideas let me know. When you try to do research online it can become really overwhelming and eats up your time.

We had a good time away this weekend and I hope to post about that soon. All in all, we are doing well - waiting until Wed morning!

My perfectly made son...........

Before Carter saw the doctor today, he had to get his blood drawn. This was a terrible experience. The events from the weekend were fresh in his mind and he started to cry as soon as we walked in. Not only did he cry, but he told me it hurt him. He didn't even want the nurse to touch his hand. It is really hard as a Mom to hold your child still and to allow hurt. Our doctors visit went well, but it really didn't tell us anything different. All we can do is wait. Talk about a faith builder! Each week, after they read the results from the blood test, they will determine the next step of action.

It wasn't until I got home that I found out Carter's blood count. His hemoglobin and red blood cell count had dropped. Not good. I wasn't expecting much change since he just had a transfusion 4 days ago. His hemoglobin was a 5 when he entered the hospital. It raised to a 8.3 after transfusion. Today it was 7.5. It is supposed to be between 12-16. The nurse thinks Carter will have to have another transfusion if it drops to 7 or below. He is only 1/2 a point away. The positive is that his white blood cell count went up which usually happens when you are fighting infection (it was low upon leaving the hospital) and his reticulocyte count went up very little.

If it is TEC, as thought, then his numbers should start improving. If this doesn't happen, then the doctors will start going down another road. This would most likely involve lots of tests. We should know more by 12/03. Carter will be going back the Wed before Thanksgiving for more blood work.

Thanks for your continued prayers. Not only do I want to keep my dear friends and family up to date, I also want to be diligent with keeping good records and I feel this is a good way of doing it. As I pulled up my blog this evening a song started playing. The first few words were, "God over all, giver of life and health and breath, I want to sing of your love." It really struck me hard! Pray that I will remember this.