He knows what He's doing...

This week we have had a really rough time because of an allergic reaction Dan had, he has been on prednisone aka the devil drug!!! Today Dan cried for two and a half hours.  After the two hour cry we went to Cabalas and he was back to his happy self. Tonight in the bath Dan was singing a veggie tales song that brought tears to my eyes: "The Lord has given this land to us, no need to fuss, He knows what's He's doing!  The Lord is with us and He will take care of us, He knows what He's doing..." #GodissoGood #Godwilltakecareofus

Rough night!

Well we did something new tonight and failed miserably!! We started Daniel's treatment and then Ryan took Daniel on a Daddy/ Daniel night.  We attached his IV to his belly and put his pump in a bag and off he went.  Although, Daniel loved his yogurtini, his medican seemed to not go in at all.  In fact the treatment took over four hours tonight!  We started a new line hoping something was wrong with the IV.  Needless to say we will be calling the doctor tomorrow, this is probably really bad news.  The last time his treatment was not absorbing the doctors told us that we would have to do a double infusion(which means two pokes) or a whole new treatment which means hospitalization.  Please pray for wisdom as we move forward with these important decisions

 

Update on Dan the Man

We have been having some hard times with Dan and his treatments.  Two weeks ago Dan's treatment took over three hours and last week his medicine started leaking out the site!  Yes, it is always an eventful time at the Butler's.  So yesterday we had another treatment that was supervised by the nurse.  The doctor is concerned that his body is not obsorbing the medicine correctly.  So last night we had to give him his treatment in his stomach.  We are going to try changing sites from his legs to his stomach and rotate occasionally to see if this helps.  If it doesn't we will have to do two infusion sites weekly, which means two pokes:(. 

Thank you for your prayers and all the love and support!  We feel very blessed!  God is Good and we know he is holding Dan in his arms!!!

Angela

Treatment #2

Tonight we did another treatment on Dan.  Tonight was very hard.  Dan fought us a bit saying things like "why do I have to do this?"  "I don't want to get poked!"  He was crying and eventually Ryan had to hold his hands so I could give the shot.  It basically sucked...there's just no other words for it.  He settled down once the medication started, but I had to walk away.  I lost it, this is the hardest thing I've ever had to.

We also spoke to the doctor this week we are watching Dan very closely if his reaction continues to get worse the first option would be to change the brand of medication.  The second option would be to do his treatments in the hospital once a month which is definitely not a good option for Dan.

Please be in prayer this week that Dan doesn't have anymore reactions and that his body accepts this treatment.

Your phone calls, visits, text messages and prayers have been overwhelming!  Thank you, we are expecting God to show up in a big way and we know that God will use this for his glory!

Ang

Rough Days

Daniel has had several rough days...he has had migraines for several days and has been throwing up.  He came home today from school and said his eyes were shaking.  

We need prayers!  We are suppose to do another treatment on Thursday and these problems will only get worse.  Please keep little Dan in your prayers!

1st Treatment at Home Tonight

Tonight we did Dan's first treatment at home.  Or maybe I should say that I did Dan's first treatment at home. . .Tonight was a really big deal for me.  Our nurse sat with me and walked me through each step by step(and yes I took detailed notes, no jokes allowed!)  This was super hard for me, until last week I had never even been in the room when my boy had been "poked" with a needle.  I normally let the nurses be the bad guys and I come in and rescues my babies from the big bad nurses.  Tonight I was the one doing the poking. . .it was hard!

But all things considered we did it and Dan did awesome!  Dan and I joked about this being his medicine boom box.  Doing the treatment at home where he can go to bed as soon as its over which was much easier then last week.  I will keep things updated as the week continues.

We are praying for no new side affects this week.  One of the advantages of him going to bed right away is that the huge bump on his leg will hopefully go down before he wakes up and needs to go to school.  But the other side affect that was very hard for Dan was the head aches that followed the two days after the treatment.  If these are the only side affects that we have we are very blessed!  Please keep praying, your prayers are being felt and answered!

Thanks for all your prayers and support,
Ryan and Angela

Daniel's Treatment Today

Today was Daniel's first Infusion treatment and he was a champ!!  We started our morning getting Steven off to school and taking Josh to the baby sitter's.

When we arrived at the doctor's office we spoke to the doctor about a rash that Daniel has developed from the wart treatment that he has been having.  We then met our nurse who will be working with us to get us trained to do the infusions in our home starting next week.

 The nurse started the treatment and Daniel looked at her and said "Wow, I didn't even feel that!"  He then laid back and played with his toys and watched movies for the next two and a half hours.

 Once the treatment was started we went and got Steven from school, we knew that he would be super worried about his brother and we wanted him to see that he was just fine.  They sat and played a football game for about 45 minutes before we sent Steven back to school.

 One of the things the nurse brought was a monkey that she showed Daniel everything that she was doing to him on the monkey.  And then gave Daniel a book on infusion treatment that was written in kid terms and a journal for his monkey to "record the monkey's feelings."  This was such a blessing today because Daniel did not express very much of "his" emotions but the monkey had all kinds of emotions that he wanted to talk about.  Daniel's monkey has now gotten three infusions since we have been home tonight and I was informed that he is feeling much better and the medicine must be working.

 The one struggle that we had today, which was a very minor one at that, was that Daniel will have to take Benadryl at the beginning and end of each infusion.  Which of course makes him very sleepy but as most of you know Daniel does not slow down for anything really. . .

So the doctors nurse was a huge help, she brought in Wreck-It Ralph, which is one of Dan's favorites for him to watch.  He was just sleepy enough that he laid down and watch it from beginning to end and loved it!  This not only helped pass the time but also helped him calm down a bit.  We are probably going to have to invested in this movie before next week because it was a huge help!

After the doctor we went home and laid down some more, which he was not super happy about but did pretty well for a time.

He then decided that he needed to have a battle!  I had talked to Daniel about the need to rest his leg, where the medicine was still absorbing in his body(it looked totally gross like he had a softball sticking out of his leg) and that he needed to do something that was calm.

So of course it made perfect sense to him that he should sit and put a battle together on the coffee table. I was then informed that this was totally fun to do without Josh around because he didn't have to worry about the little parts being eaten by his brother.

As we were driving home from getting Josh from the sitters the song "Whom Shall I Fear(God of Angel Armies) by Burning Lights came on the radio.  Daniel was singing his little heart out and I got a short video of him before he noticed I was recording and wouldn't let me record further.  I was crying my eyes out by the time we got home.  From the mouths of babes. . .

The song says:

I know who goes before me,

I know who stands behind,

The God of Angel Armies is always by my side.

The one who reigns forever

He is a friend of mine

The God of Angel Armies is always by my side

So whom shall I fear. . .

The God of Angel Armies was definitely beside Daniel today.  His presences was felt and our prayers were definitely answered today!! The treatment could not have gone more prefect.  As of now Daniel has not had a single side affect that the doctors talked to us about, the doctor even thought this was odd.  But we of course know that we serve a Big God who loves us and we know that he was protecting Daniel today in so many ways!  The love and support that we have felt today from the text messages starting early this morning, the meal brought to our house for dinner(and many others offers to do so), to the friends dropping by to encourage us and Daniel is overwhelming.  We are so thankful for our family and friends who love us so much to show us this love in such tangible ways on this hard day.  We know that our God is bigger then this disease and we look forward to the doctors not being able to explain the God miracles that we believe will happen in and through these coming months.  Thank you for your prayers and support!  

God be with you.

Ang and Ryan

Prayers Answered!!!

Today we had a very good day.  God answered several of our prayers!!!

1. Daniel was approved for infusion treatment, and it is covered 100% by insurance!!!

2. Daniel will be starting his treatment this next Tuesday at 8:00am.

3. We also told both Steven and Daniel tonight, we did not tell them specifics or as detailed as possible. We just talked about how Daniel was sick and the doctors are working to help him get better.  And this medicine may take awhile to help him.

Steven, was very concerned and asked a lot of hard questions.  We talked to Steven separately so that Daniel did not overhear these questions and get more worried then necessary.  This was super hard for me, it was like I was sitting in my kitchen as an eight year old again listening to my Dad tell me "Don't worry until I tell you its time to worry."  I am going to chose to look at this as a blessing that I have been the sibling with a chronically ill sibling at home, and hopefully I can help Steven with some of the things that I know I struggled with as a child myself.

Daniel on the other hand was very cute!  He asked if the needle was going to be like the blood sucking needles, "because that one doesn't hurt that bad, Mommy."  He then asked if we would have to go to the hospital, when I told him that we were going to Dr. Casper's office, his response was "Good I like him."  And then in a very matter of fact way he said "Ok, can I go outside and play now?"

God is so Good!!! I'm sure that Daniel will have more questions and we will have more hard conversations but for tonight God helped us to speak to our baby in a way that he understood and did not seem to be over concerned with.

Thank you for your prayers, They were felt and obviously heard!

Love,
Ryan and Angela

Update on Daniel

Today I heard from the new pharmacy.  They are working on getting authorization for the treatment, hopefully this next week.

We have been getting the run around from all kinds of different people.  However, we have had some angels sent from God.

Kathy is Daniel's advocate, or she was from the first speciality pharmacy.  When they denied our claim with them, she was suppose to be done with us.  However, she is the only one who has helped me this past week, she has talked to me and listened and given advice. . .Even though she is not being paid.  I am thankful for her wonderful help.

Michelle is a lovely lady that I spent most of my time yesterday speaking with.  She was one of the first (other then Kathy above)  who truly listened to me.  She is currently advocating for Daniel to get a case worker with the insurance company this would be huge!! If we were approved we would have one contact at the insurance and an advocate within the insurance company.

I am constantly having wonderful people asking what they can specifically be praying for:  So this week we are praying that the insurance will approve Daniel's treatment, quickly.  We are also praying for the case manager to be approved as well.  But the biggest prayer we are praying for right now, we have still not told Daniel.  Both Ryan and I are broken hearted about this and it is pretty emotional just to think about talking to Daniel.  Please pray for the words to help Daniel understand, and to help Ryan and I speak loving and comforting words.

Thank you for your prayers
Angela and Ryan

Prayers for Daniel

We have been really struggling with getting Daniel's treatment going.  Today I went rounds and found out that per the insurance there has been no approval.  I have been going circles with the "special pharmacy," the doctor and now the insurance.  We have another appointment with the PCH Dermatology on Tuesday and the plan is to talk to the supervisor and then sit at the doctors office until we get something accomplished if you could please pray on Tuesday morning/afternoon for some help with getting this process going.  We are at a huge loss as to what to do next.  We just need our boy to get better!

Update on Daniel

Hello wonderful Friends and Family,

My phone has been blowing up with your love and support for Ryan and I and of course Daniel.  I am really struggling with the emotional energy to keep repeating the happenings over and over.  So I thought I would come back to this blog so that you can check on Daniel's journey with this new diagnoses.   If you were not aware fill free to look through the past post on how we discovered Daniel's immune system problems almost three years ago.  This is the current stuff that we are dealing with.  Thank you for all your love and prayers we really appreciate it and we are so thankful for such amazing family and friends!!!

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Ryan and I wanted to give a quick update on Daniel. We had a check up a few weeks ago and I went in to discuss the results today(Thursday, July 25th) with his immunologist. The results are not good. His Igg levels continue to be very low and the doctors have now diagnosed him with a disorder called WHIM. Starting next week we will begin a treatment called "Sub-Q Ig therapy". We have two options the first option is to admit him to Phoenix Children's monthly for this treatment. The second option is to do a weekly treatment at home, this would require training and an in home nurse for a time. Whatever option we chose, We will be doing for 12 months before reevaluating his levels again and deciding our next steps. The scariest part is that if this doesn't work the next step would be a bone marrow transplant.

We are very scared and would love for prayers for wisdom as we make some very important and difficult decisions this next week. We also are praying that our insurance will cover these procedures as there are some other options but these are the easiest on Daniel. Lastly, we need prayer for gentle words as we have not told Daniel any of this yet.

As of today, August 1st we went back to PC Dermatology. The appointment was not good. We saw Doctor Hansen, who is the head of dermatology he explained that there are only 25 cases of WHIM in the United States and that it is very unlikely that any treatment will help the warts that Daniel is dealing with. As I'm sure you can guess we are pretty upset about this and are simply praying that Jesus steps in and the doctors are wrong.

Again thanks for all the love and prayers~

Ryan and Angela