Brayden’s Battle

At 10:30 am Brayden will be going in for his next bone marrow procedure at CHOC.  There are a few key things to be praying for (in order)…

a) Fasting for the boy is HARD, so pray that he sleeps well and is not hungry at all in the morning (unlikely I know so pray for lots of morning distractions)

b) Paper work… pray that all of it gets processed in time.  Tomorrow is our first day transferred over to CHOC so approvals need to happen in a timely manner etc.  AND we can not be ‘hospitalized’ on first day so…

c) Procedure goes well (duh)

d) Recovery is quick, since we need to be discharged and of course because we want to too

e) GREAT Results.  Big test, the last day of induction (1st phase of chemo)–ultimately that the cancer is GONE.  Will also get other results that I look forward to sharing on Sat. when we find out.

f) Finally/Ultimately pray that God would continue to glorify himself through our precious boy and take care of Brayden in ways that we can not.

THANKS for all the support, love and prayers.  We feel them and need them… especially tomorrow.

a few update request for prayer:

1.) Continue to pray against infection with Braydens immune system so compromised… and then of course this new out break of swine flu doesn’t make it any better.  Please pray against him getting sick at all (as he cant handle anything, let alone a huge virus) and yet he still needs to go out to the doctors tomorrow and Friday for chemo/labs etc.

2.) Pray also against infection for us in the house as none of us can get sick either.  This affects the way we work and even the errand we (at times need to) run.

3.) As I mentioned Friday is a big day.  Pray for all the insurance switch to go smoothly and treatment to not skip a beat.  So far so good on this front, but please pray with us and see it through.

4.) Probably the biggest (along w. #1) pray for NO CANCER on Fridays bone marrow test.  This is the last day of the induction phase, and the hope and prayer would be that the doctor would say there are no cancer cells in Braydens blood (still small micro ones, but no regular size one–that’s official doctor talk I’m sure ).  We will also get a test which will show us the odds of the cancer coming back which will affect the continued treatment.

Either way we are in it for the long haul and praying for miraculous healing.  No matter what comes back Friday treatment and chemo will continual (the intensive treatment for 3-5 more months) and then maintenance for the next 2.5-3 years.

Thanks for all the prayers, we feel them and need them.

DS

Per many of your request I have uploaded a few videos…

This first one is Brayden playing basketball outside.  He is allowed to hang out in our back yard and loves going out for as long as he can last… which is usually 10-30 min depending on the day.  Today was extra long

The best Fathers day gift I have ever received was this basketball hoop from/for Brayden. We have had so much fun playing ball in the back yard. He is a great shooter and dribbler [especially when daddy put air in the ball; which hasn't happened for a while :(]  My favorite part is after he makes the game winner, instead of boasting--all he does is back it up with another basket (you have to listen carefully for the beautiful swish)

This second video is the boy playing some baseball with his grandma…We’ve been watching ‘The Sandlot’ for the last few days (nonstop), it is the only non animated movie he will watch. He has been picking up on tips from Benny, they are pretty cute (note banging on the plate and calling your shot)

The third video is really just for a couple of Braydens friends: Eli and Brennan.  But if you want to watch it you are welcome too… just remember he is a drummer and not a singer:)  HAPPY BIRTHDAY buddies…

We just got back from a great trip to the doctors.  The chemo went well, he continues to respond like a champ.  The port access went as smooth as the first time as he keeps getting more and more comfortable with this whole thing.  One of the nice things about his age is that we are pretty sure he figures this is what every 2 year old goes through–which is nice for us, and for the lack of future memories for him, of course

Speaking of trips… the struggle with the insurance company has simply been transferring primary care providers.  As of May 1st we will be in a new PCP which will allow us to be treated at CHOC (Children’s Hospital of Orange County); which has  a world renown reputation and is a top facility on the west coast.  It still comes with some bitter sweet tension as we love our oncologist, and will miss her dearly.  But we are very comfortable and excited to be at CHOC.  Yesterday we had a tour of their facilities (amazing) as well as met with Braydens future Oncologist (and other than the fact that he is a dodgers fan, we really like him!).  There are still some things that need to work out for this to go through for next Friday, but so far so good–everything looks like it is working out great.  The location of CHOC is ideal (its close to our home) as well and according to my numbers will save us about 500 hours of our life over the next 3 years.

Thanks for the continued prayers and support.  More updates and videos to come this weekend.

Thanks for the continual prayers, as well as the unbelievable response to our needs list.  Not only is God providing in unbelievable ways through sustaining and maintaining us.  But He is also providing practically through so many of you all–THANKS SO MUCH>  We continue to be overwhelmed by the showing of your support and love to us as a family during this difficult time.

A lot has been going on these last couple of days with insurance stuff  (all getting taken care of, slowly but surely).  And yet through it we continue to feel your prayers and support.  Please keep them coming as tomorrow we have another ‘BIG BOY’ chemo session around 10am, which also means another tough weekend for Jen as Brayden becomes untouchable again please pray for this as well as his continual fatigue from the medicine (and that he continues to take them–Jen is doing a phenomenal job managing them all with him).

Tomorrow we will hopefully get some stuff finalized with insurance which will be a huge praise.  I will be sure to update you on all of this, as well as the treatment tomorrow afternoon.  Thanks again,

Drew, Jen and Brayden

When we first told Brayden that we were going home on Saturday he was not very happy… he saw me packing up his toys and nurses coming and saying good bye and the poor kid freaked.  He was so sad.  But after a few hours (it was 5 hours between the time we heard we were going to be discharged and when we actually were), and once he realized that He was not attached to any cords, iv’s, or monitors and that He was in his daddy’s arms and could actually move… HE SNAPPED.  There was screaming/crying/laughing literally all in one.  It was one of the most beautifully scary things I have ever heard.  He was in my arms and I could not see his face, so I looked at Jen and realized that she was crying too, but these were all tears of JOY.  He finally got it.  And got what he had wanted so bad.  I cant believe we didn’t have it on film, I think 10k would have been guaranteed from Americas Funniest Videos, but regardless it is a memory we will always share between the 3 of us.

So although we don’t have that video to share, we do have this one from the car ride home from the hospital

This next video was taken tonight.  Brayden loves giving kisses, He is a lover.  And about a year ago he saw mommy and daddy kissing and thought ‘I want to kiss like that’… I’ll try to keep it PG, so lets just say, kids shouldn’t be kissing this way if you know what I mean.  So we started calling those wife kisses.  Kisses he would only share with his wife, and should not be sharing with either mom or dad--no matter how much he loves us.  Obviously this is still something we are trying to get through to him.  Lucky for you, he decided to share some wife kisses with the camera/viewing audience… here it is:

We just got back from Braydens first outpatient doctors visit.  They accessed the main line/port and took labs etc.  HE DID AWESOME.  Plenty of screaming but overall, way less than we had anticipated.  He is even taking his meds better today so thank you for all the prayer and continued support during this marathon.

I have gotten a few request to clarify where we are at in the process (and what the process looks like), so I will do my best (remember I am only explaining what I think I know).  We are reminded every day we look at the road map that this is a marathon and not a sprint so we are trying to continually pace ourselves for the journey ahead and enjoy the process as much as we can.

The first phase of treatment is called induction.  It last for the first 29 days of which we are trying to kill off all the cancer cells (good ones go too in the process) and in a sense reboot his system.  This is the intensive chemo period and we hope to be done with this by the 1st of May.

The 3 phases are as follows: consolidation, interim maintenance and then delayed intensification.  These phases last 30-57 days depending on how he responds.  There is lots of chemo that gets introduced during these phases and the hope and prayer would be that by the end of these 4 phases the cancer is gone and it is declared that Brayden has entered into REMISSION!!!!!  This is all done as outpatient procedures.  A few nights here and there in the hospital, but for the most part it is just 2-3 doctor visits a week for lab/chemo/etc.  During these 4 months Brayden immune system will be at its lowest point(s) so infection is always a concern and thus you will not see him a lot and we will not be able to have many/if any visitors at the house.  We went from being prisoners of the hospital to being on house arrest (still much better).

At the end of this intense period and once remission has been declared he begins what is called maintenance.  So somewhere between August and November depending on how he responds to all the chemo.  Maintenance then continues on for the next 2 1/2 to 3 years and includes every other week doctor visits as well as the chemo meds every day (He will be taking somewhere between 7-12 doses a day of various medications, steroids and oral chemo).

As far as Jen not being able to touch her beautiful son, this is not for the entire 3 year process but rather only 48 hours after the BIG BOY Chemo which is currently being done on Fridays.  The other chemo does not effect her and the new baby, but the 48 hours will continue on through nursing the new baby–so probably a year from now she will be able to be off Brayden restrictions.

Im sure there are a lot of other details and questions many of you have, but this is the best way I understand it and the quickest way I can describe it.  Hopefully it allows you to know how to pray, not just today but also the next 3 years I know I promised more pics and videos… I will get to them I promise (still).