Tuesday, January 28, 2014

Update on the new treatment

Many have asked and so here is a short update on Dan and how the new treatment is going.  Sorry if we have not updated more often...there's just not a lot of positive to say.

The new treatment requires the three shots which has caused Dan to have quiet a bit of soreness in his belly.  And although he has not thrown up in the last two weeks from head aches(which is a win),  he has been extremely moody and emotional.  He seems to be reacting to this treatment like he is on a steroid, with crazy mood swings!

The treatment does go faster which seems to be a good thing for Daniel but overall we are not seeing a ton of changes in his head aches and the general side affects.

We are going to keep with it for a few more treatments and hope for the best!  

Thank you for your continued prayers
Ryan and Angela 

Wednesday, January 15, 2014

New treatment!!!

We are starting a new treatment tonight!  Daniel has been really struggling with major headaches that have been causing vomiting and just mood altering in general.  Our worst days tend to be Sunday afternoons and Mondays.  Monday nights especially, by the time he gets home from school on Monday night he's just done and typically just lays on the couch if not throwing up in bed.  This of course is all weird to the doctors because they have no idea why he's getting sick three days after his treatment.  

So when the decision was made to change the treatment we had no idea that the two treatments were so different!  Tuesday the pharmacy called to tell us that we were going to have to start doing three infusion sites instead of one.  That means three injections rather than one!  As any Mom might I started freaking out trying to think of how I was going to explain to my six-year-old that now instead of one poke he was going to get three every single week.  In addition, to the three injections we now have to have a nurse come to the house to watch this treatment because there's a higher chance that he would react with a reaction of shock with this medicine. 

 So like any conscientious mother I called the doctor and became a nag!  Apparently, I had not asked enough questions when we decided to change the medicine I had no idea the risk factors with changing the brand of the medicine versus the risk factors of keeping the same medicine and dealing with the sickness.  Thankfully my doctor is absolutely amazing!! God has reminded me time and time again that he is watching over Daniel and all of us by providing people in our path who really do care for us and especially for Dan!

So tonight we used the "magic lotion" this is a cream that is suppose to numb the skin before the injection.  And although Dan was not happy about getting poked three times he came through like a champ!  The nurse was amazed at what a good system we had down.  Some of the positive things of this new brand is that it will infuse in a little over an hour!!! Also, because he is getting the medicine in three spots he may not get as much swelling in his belly.  So tonight went well!  God is good and we will keep praying that this new treatment works better!  Thanks for your prayers, they are felt and we feel very loved!

Ryan and Angela

Monday, January 6, 2014


Sorry for not posting for a while.  I would have said no news is good news and we were blessed with my family in town for the last two weeks, although some of that is true...health doesn't take a Christmas vacation.  Overall, Daniel did pretty good the last few weeks.  We have had two different infusions not go well:  one did not absorb and we had to start a new line and the second took over four hours.  But we are learning that this seems to happen every few times...so rather then treating it like a crisis were trying to be happy we are still doing treatments at home and not at the hospital!

Last week, we had another hiccup Daniel's infusion site(the one that took over four hours got infected).  So we are currently treating that with antibiotics and hoping that the infection goes away soon.

Today was especially hard for Dan Mondays in general are difficult he has more head aches and tends to have the most reaction to his treatment on Sunday afternoon into Monday.  But today he actually crawled up into my lap and laid there for over an hour!!!  We did all the normal meds and basically sent him to bed.  He wanted to sleep with Steven and Steven let him, but Steven told him remember Daniel just say your memory verse Joshua 1:9 be strong and courageous and you will feel better!  We are so blessed to have boys who love God and each other so much!!!

Tomorrow Dan has an appointment with Pheonix Children's for his wart treatment please pray, this treatment is not going well and we are not sure what the next steps are in this process.

Thank you for all the love, prayers and support,  God is good and we are confident that we will see his goodness through this situation!
Ryan and Angela