Treating at Home Today!

We were able to treat Coleton at home today with a home healthcare nurse.  Coleton was very excited to see "Rose" (she has come over a few times before, when we were learning to access Coleton's port for treating with factor 7).  He was Mr. Silly-Man while she was here, and when it came time to put the needle in, he was very tough.  He didn't even cry or fuss, just winced.  That is the second day in a row that he hasn't cried for "the poke", and we are so proud of him!  Tomorrow and Monday we'll do treatment and testing at the clinic.  This weekend we'll be able to treat him at home.  We don't have any plans past Monday, but are hoping that home treatment will become more of the norm.  Things are going great!  God is so good!

A Good Day at the Clinic

Chase blessed Coleton and me this morning by telling us he was taking the morning off of work to go to the clinic with us.  Coleton was so excited, and it was good timing for me after what happened yesterday.

Coleton is ready to go, with his new puppy, "Dinger" and fun stuff in his backpack.

Coleton thinks taking medicine is pretty much the same as getting a treat.  Here he is with Daddy and Sue.

The morning at the clinic went great, with no headaches or any other evident side effects.  Coleton's factor levels continue to be good, indicating no inhibitor - more praise to the Lord!

He's Quite the Trooper

Mommy, Coleton ("Mr. Happy") and Auntie Jennie head off to a day at the Clinic.  Though he knows he'll have to get poked, and earlier in the morning had a little cry over that realization, he's recovered and actually seems happy to go for a visit to the doctor and to see his favorite nurse, Sue, who is usually the one to "poke" him at the clinic.  We arrived home from the hospital yesterday afternoon, and were all very happy to be home and reunited with Sarina! Coleton has been doing great since we've been home, and has especially enjoyed playing with his sister and running around free from i.v. lines.  This morning we headed into the Clinic, and everything was going well until we were just about there and Coleton started crying.  Just as we parked, he started throwing up.  This was very concerning for me (Sarah), but Jennie was a huge help and did most of the cleaning up as I changed his outfit.  After a little while, he seemed back to his cheerful disposition, playing with all the fun toys in the Clinic.  We went through all the pre-meds, and he received his factor; then we settled in for a "boring" hour of hanging out at the Clinic, while observing him to make sure he didn't have a reaction.  About half an hour into our wait, Coleton started crying...then screaming, holding his head, and squirming as though he wanted to crawl out of his skin - something he's definitely never done before.  It was a very scary time.  They were able to get him some morphine right away to calm him down, and that helped a lot.  The doctors aren't sure exactly what it's from, but they think it may be due to withdrawal from one of the medications they had taken him off of because he was doing so well. Now, they will try to wean him off of this medication slowly to prevent withdrawal symptoms. They don't believe it has to do with the factor or inhibitor, and all other observations did not suggest an allergic reaction. We got home late this afternoon, Coleton took a long afternoon nap, and is doing much better - seems back to his normal self.  Thanks to everyone for their continued prayer and support!  Thanks to Jennie for putting up with a very stressful day and emotional mom!  Thanks to Mom for taking care of Sarina!  Thanks to everyone for taking such good care of us in the hospital, with goodies and gifts, and especially with your prayers and love!  Coleton's factor levels continue to be high, a sign that the inhibitor has not shown up - Praise the Lord!!!

Another Good Day!

Grandma had to much fun dressing up Sarina to cheer on the twins!  We sure miss our little girl!  Thank you Mom for taking such good care of her!

More good news!  This morning, labs were drawn to check Coleton's factor levels again.  The results were that the factor level was at 63%.  Typically the half life of the factor (after 12-18 hours) will be half.  These labs were drawn almost 24 hours after the original labs, which measured the factor at 136%.  Coleton's doctor said that she is very very happy with these results, and she was not expecting them to be so good.  He was given his second dose of factor this morning, shortly after labs were drawn, and that went very well.  His factor level since that has gone up to over 200%!  Other than being a little crankier than usual at times (likely due to the meds.), he is doing very well.

Coleton was delighted to receive a gift delivery from the church family today!  He loves his puppy and balloon!  It came at the perfect time, when he was getting restless to get out of bed and be free from the port needle and all the tubes running into it.  This kept him entertained for that last half hour before they were able to de-access him.  He is now free from needles and tubes, playing with Daddy in the playroom, without having to be followed around by Mom with his i.v. pole.  Needless to say, he is thrilled about this.

Tomorrow and Sunday, we will go through the same routine as these last 2 days.  Please continue to pray that the inhibitor would be gone.  Often the inhibitor would show up 3-5 days after exposure to the factor.  Tomorrow will be the third day, so please continue to pray!  Thank you so much!  Things are going very well, and we are praising the Lord for His goodness to us and for you and your prayers for us!

Love in Christ,

Chase and Sarah

This is Coleton's least favorite part!

He is quite the trooper.

Coleton's doctor giving the first dose of factor.

Thank you all so much for your prayers for Coleton!  He is doing very well.  He received his first dose of factor around 10:30 am, and he has had no allergic reactions.  The only side effect from all the other meds. was an initial response of drowsiness to the Benadryl, which was minor and to be expected.  His body did respond to the factor, in that his factor level went up to 136% (normal levels are between 47-104%, and his was below 1% before receiving factor), so that is very good.  They will continue to monitor that, as well as every other body function, it seems.  It has been a full day.  Watching Coleton get that first dose of factor, and seeing that he showed no signs of allergic reaction was a definite high point!  He did end up jostling the needle out of his port, as he was playing, causing that needle to have to come out.  Additional lab work was needed, so he ended up needing to get an i.v. this evening, and that took a couple tries, which of course he didn’t like.  Right now he is needle-free, and he enjoyed his freedom by running around in the play area for a while.  It was great to see him, acting as we always see him, happy and full of energy.  Tomorrow morning his port will be accessed again (around 9:00 am), and he will receive his second dose of factor.  Please continue to pray that his body will not respond with an allergic reaction and that the inhibitor will not return.  We are so blessed to know that our prayer warriors are doing battle on our behalf!  Praise the Lord for what he has done this day, and for the plans He has for tomorrow!

With Love and Gratefulness,

Chase and Sarah

Coleton's Doing Well!

"Please Pray for Me!"

As many of you know, last November Coleton developed an inhibitor to the replacement Factor 9 medication that we give him when he has a bleed, to stop the bleeding.  This means that his body sees the medication as foreign and builds antibodies against it.  Since then, we’ve been using a Factor 7 product, but it doesn’t work nearly as well, needs to be used more often, and is very expensive.  Coleton’s doctor, in consultation with other hematologists around the world, recommend a treatment for Coleton called ITT (Immune Tolerance Therapy), in which we will be trying to get his body to accept Factor 9 again by introducing it to him on a daily basis along with medications to suppress his immune system.  This treatment will take place over the course of 1-2 years.  Through much prayer, Sarah and I have decided to go ahead with the ITT.

Please pray for our family and Coleton as we begin this treatment on October 8th.  Here is a tentative schedule of what will be happening as we get started:

Thursday, Oct. 8th  - Coleton will be checked in at Children’s Hospital at 8:30 am, where he will be given the first dose of Factor 9 by his hematologist, along with meds. to suppress his immune system.  Please pray specifically that Coleton would not have an allergic reaction to the factor and that his body would not produce antibodies against the factor.  (Last November, he had a minor reaction to the factor.  We have no idea how he will respond this time.)

Oct. 8th through Sunday, Oct. 11th - Sarah will be staying with Coleton at Children’s Hospital through the weekend, while Coleton continues to receive daily factor and meds. via i.v.

Oct. 12th - 16th - Sarah and Coleton will be driving into Children’s Hematology Clinic daily to continue factor and meds. under close supervision of the doctors and nurses.  They will also be doing many tests to check his immune system and inhibitor levels.  Please continue to pray that his body would respond well to the Factor 9.

From then on, Sarah and I will be giving Coleton a dose of factor daily at home via his port, along with oral meds. to suppress the immune system.  We will take Coleton into the Clinic once a week to check inhibitor levels.  Also, two consecutive days each month, we will be taking Coleton into Clinic for all-day i.v. meds.  

Please pray for adjustment to the new schedule and endurance for our family.  There are possible side effects to the immune suppressants, including irritability and overall not feeling well.  Pray that Coleton will have minimal side effects to these drugs.  Please also pray that our medical insurance and the high cost of this treatment would all work out.  We are praying that this new therapy treatment will work to take away the inhibitor and allow Coleton to use the Factor 9 product on a regular basis.  We are also praying that God may have already taken the inhibitor away and that we wouldn’t have to continue with this treatment.  If God chooses not to remove the inhibitor, we want to thank Him for that also, and pray that we would bring glory to God no matter what He chooses.  We rejoice to see how God wants to use Coleton’s special design to bring glory to Himself.  Thank you so much for your love and prayers!

With Gratefulness,

Chase and Sarah