365 days later….

Tomorrow is the 1 year anniversary of Braydens transplant–this has been the slowest/fastest year of all our lives.  And the bottom line is that we are so thankful that it is “life” that we are continuing to live and celebrate!

We have one last 1 year appt. with the BMT (bone marrow transplant) clinic and then starting in May we transfer to the survivorship clinic, which just sounds too AMAZING  We can not sing Gods praises enough for the grace and blessings of this past year, and are so thankful to have been able to share them with those of you who have been so faithful in praying for B.  

A couple of ways to pray this week:

–Satan always seems to attack and lay it on thick around milestones and holidays (no bigger one in our minds than this 1 year mark:).  Even last week, with Easter we had another hiccup in the form of a fever on Easter Eve.  Easter is probably our favorite holiday as a family (primarily for what it stands for, but we love the easter egg hunts as well:)–and the last few we have had to celebrate in the hospital bc of where B was at treatment wise.  So we were really looking forward to this year and to end up with a fever at 10:30 was a tough pill to swallow.  I ended up staying up all night and praying over Brayden (not as if I was some spiritual rock start or anything, but primarily because my car alarm went off 4 times and Carson had to pee twice and me once).  So there were 7 opportunities to lay hands on B and pray over him.  I committed that every time I prayed over him I wouldnt feel for a fever (because I can be a little obsessive) and that I would just pray and trust God with how B woke up.  At 7am, I was blessed to the point of tears, when I heard Brayden holler: “MOM, DAD, its easter, time to go find eggs!!!!!!”  It was quite to gift to wake up to on the day we celebrate the life of our RISEN savior in celebrated it with our HEALTHY SON.

Bottom line: pray for a smooth and FUN weekend!

–Ultimately we keep praying for CURE.  The one year mark is big, but we don’t think they start talking remission until year 2 and then cure in year 5.  But we are thankful for the fact that he has not been on any chemo this past year and there is currently no sign of cancer returning!  Keep praying for more of this:)  The few signs we haven’t liked lately are a couple of bumps and occasional vomit/fever–BUT all of these things have explanations and the docs say we just watch and aren’t overly concerned about them.  We have labs next week, and will continue to monitor him this next year, but not as consistently which is really neat to think about, because hopefully its rooted in the reality that we don’t NEED to!

–Also join us in praying against long term side effects.  His skin is still pretty messed up with red and eczema, but a small price to pay for life–yet we continue to pray against it.  Also be praying for all the motor skills to continue to come back (as you can see from pics below, he isn’t struggling much–playing baseball and snowboarding etc!), as well as getting caught up with his social and school skills which TBall has been helpful with as well.  Next week we will start a battery of tests to see if he has any markers for other long term concerns, so covering this in prayer is a high priority for us these next few weeks.

I think this is it for now–we have a special day planned tomorrow to celebrate B, and will start tonight by heading down to the prayer chapel at CHOC where so many hours of this journey were spent.  

We’d love it if you would join us in PRAISING GOD tomorrow for the amazing work he has done as well as praying over B and these three specific areas (CURE, protection of weekend, and long term side effects).  

Grace and Peace to YOU,

drew

Above: Brayden is a BIG hitter one of the smallest guys on our team, but one of the most consistent/powerful hitters (definitely makes mom and dad proud:).  In fact, knowing Braydens personality, he gets ticked every time he doesnt hit a home run–its very cool and a joy to watch/encourage.

Below:  Brayden also loves to field and his favorite position is Pitcher, because in Tball they usually get lots of action:)

ABOVE: Braydens first Snowboarding lesson with Mom.  HE DID AWESOME… so well that the second time we went (last week) we bought a rental board to take home (25 to rent, 30 to buy=no brainer:).

 

 

Brayden and bump update…

Brayden looks and feels great… he really has no idea what is going on behind the scenes, other than that he caught mommy and daddy crying on Friday afternoon and asked what was wrong and offered to pray for us:)  Sweet boy.

Friday was a pretty long day for dad.  We emailed the doc early in the am and then ended up texting him around 1 bc we hadn’t heard anything back and wanted to make sure he got it before the weekend.  He texted back about an hour later saying he has just emailed us a response, so I waited.  And Waited. 15 min. 30 min. 45 min. NO email.  I felt like God was screaming at me: “TRUST ME…. it really doesn’t matter what the Oncologist says, I am the one who holds your son’s future in my hands.  Not Him.  Not his wisdom.  But my healing and sovereignty.”

So I walked away from the computer/phone and never checked my email again, fully trusting Gods message and the rest of the weekend has been glorious–Wouldn’t that be cool if that’s what really happened?!?!

I actually checked it 100 times and waiting faithfully for the email tone to beep:)

I remember responding (with Jen) in tears in our hallway (which is when Brayden found us), that God: “I do trust. We do trust.”  I felt myself saying any and everything I have already written countless times in this blog over the past 3 years (April 1st will mark the 3 year point from initial diagnosis).  So we cried out to God together, continuing to pray for healing and deeper faith for us as parents.  I ended up texting the doctor again and he said he didn’t know what the email deal was, but that “I don’t think this needs urgent attention at this time” which of course on one level we think: GREAT, but on another we go to, ‘not at this time’ but later.  Frustrating life, huh?!?!

Remember it was swollen lymph nodes we found (multiple ones) at relapse as an initial sign of recurrence and the only way we really found the cancer was to do the bone marrow biopsy back in Dec. of ’10.  That was easy to do because we already had a procedure scheduled (we were still in the middle of treatment) and port in etc.  Present day: March 4th, 2012: One little lump would not warrant a BM biopsy at this point, but could be the initial sign of something going on.  SO the answer from the doc is, don’t worry about it right now–if it is something over time it will show up… it takes time for the cancer to develop from the Bone marrow and get into the blood stream anyways, and we will start to see symptoms if B’s body isn’t doing well.  For some perspective, the Bone marrow test from 2010 was 75% cancerous, and yet there was no evidence in the blood at that point, so it does take some time–but Jen was noticing some symptoms then which SHE IS NOT seeing right now.  She knew it in her gut back then, and doesn’t feel that way now.

But we still can’t deny the oddities and irony of Nov./Dec. of ’10 and current day….

–I am back in the swing of things at work and LOVING life, we feel a sense of normalcy forming again.

–I am teaching at Biola again, and have even had opportunities to teach at conferences and universities  teaching a very similar message: Joy in trials and TRUST GOD always: His better is better.

–We have had the same family and friends visit in recent weeks as just before relapse

–We have a trip planned to NY (just for Jen and I) which we have postponed and cancelled twice bc of cancer and relapse.

–We have a fundraiser/benefit planned which happened just before relapse and is on the calendar for next week.

–I’m sure there are others, but this is all I’m thinking of right now (its nap time, so I’m not all here:)

But God is in control in spite of (and in) all these things, and actually we just feel like this may be one of Satan’s big attacks before we push through the 1 year post BMT day.  For every eyrie similarity there is one or two large DISsimilarities.  Brayden is NOT fatigued or tired, in fact he just jumped in the pool after going to sunday school, playing at the park and hanging out at a friend’s birthday.  Energy he is NOT lacking he also hasn’t complained about his bones or teeth at all, which were big precursors coupled with the lymph nodes.

I will say that this time has been unlike any other, in the sense that though our hearts have been swayed towards fear and worry; our gut/tummy has remained peaceful.  This is from God alone.

Bottom line is we want to pray for healing and trust.  We do not know if Cancer is coming back or not.  But we do know that HE DOES and is in complete control.  And that even if Cancer was ever coming back, GOD could in an instant stop it and kill it ALL.  This is the GOD WE SERVE and the God we cry out to and the GOD WHO LISTENS and responds.  So please join with us in praying.

Since Friday, we have laid low as a fam.  Spent time enjoying each other and resting.  The boys and I went on a man date to the beach to celebrate the life of a man who lost his battle to cancer and praise God for the lives we all have.  WE then went to mini golf and had a nice Sat. afternoon hanging around the house.

Last night though Jen started to feel a little attacked and woke up this am feeling unsettled and a little worried:(

I quickly joined Jen in feeling sick for her and with her and then sat down and for whatever reason opened up FB (not a regular practice, when frustrated, but God using all things:)… and this is what a friend wrote:

March 4
Refuse to worry! In this world there will always be something enticing you to worry. That is the nature of a fallen, fractured planet: Things are not as they should be. So the temptation to be anxious is constantly with you, trying to worm its way into your mind. The best defense is continual communication with Me, richly seasoned with thanksgiving. Awareness of My Presence fills your mind with Light and Peace, leaving no room for fear. This awareness lifts you up above your circumstances, enabling you to see problems from My perspective. Live close to Me! Together we can keep the wolves of worry at bay.

“Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest?”
—Luke 12:25–26

A perfect message from God, about Him and trusting him….

Remember we have been reading through Isaiah as a couple and there is clear imagery about God providing those in Zion a crown of beauty instead of ashes (61:3).  God popped the song by crystal lewis: “beauty to ashes” in my head, which is odd because (a) it’s the first song I ever “performed” back when I thought I could sing:) and (b) it’s not a current song making its rounds so it was simply the imagery from Isaiah and lyrics of CL that brought us encouragement as a couple that again: God is in control and His better is better.  So we spent some time worshiping this am as a couple though itunes and CL:

He gives beauty for ashes 
Strength for fear 
Gladness for mourning 
Peace for despair 

When sorrow seems to surround you 
When suffering hangs heavy oer your head 
Know that tomorrow brings 
Wholeness and healing 
God knows your need 
Just believe what He said 

From there I got in the car and headed to work/church and of course Chris Tomlin was rocking “Our God is greater, our God is stronger, God you are higher than any other… Our God is healer, awesome in power, our God…. Our God”  Again it was as if God was whispering: “Trust me, I’ve got it…. I’m in control”.

At this point the whispers were feeling more forceful and eventually felt like screams.  I saw another quote on FB from a friend: When a train goes through a tunnel and it gets dark, you don’t just throw away the ticket and jump off. You sit still and trust the Engineer. – Corrie ten Boom  Again: “TRUST ME, I am the Engineer” but more; Im the creator of the freaking train and railroad and COSMOS.

At this point I started to laugh a little, and then the worship team started to warm up which I can hear in the offices… they were playing a song entitled: “Today is the day” which is from Psalms 118, and has been a text we have claimed throughout our journey; because EVERY DAY is the day the Lord has made, even when and if we don’t get the circumstances we long/hope for.  This song/psalms also clearly states: TRUST GOD!

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 hand to Yours
Believing there’s so much more 
Knowing that all You have in store for me is good

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

At this point in the morning you would think I was fully trusting and living in light of all these reminders, but just in case I wasnt… Jen texted me saying that as she got in the car to drive to church and turned on her radio she heard casting crowns: “Voice of truth”.  again God screaming at us (since the wispers weren’t doing it:) trust me.  trust me…. trust ME.  I texted her back calling her a liar as there was no way that song was on.  That was the song from Dec. 1st after we got relapse diagnosis for God saying you’re going to hear and feel lots of crap along this journey and road–but you need to stay close to me.  Listen to me.  Trust me.  I’ve got this.

So here we are this afternoon.  Trying to trust more.  Thanking God that he has proven and provided, over and over again that his better is better and in Him we can rest. Thanks for praying with us and for us:)

Grace and Peace,

ds

 

No news is good news, but here is some news…

Its been exactly 3 months since our last Braydens Battle update.  I honestly can’t explain why I havent updated more often.  The phrase is no news is good news, or so I’ve been told, and medically there hasn’t been a lot to update.  Brayden has been trucking along, doing awesome.  But there has been a ton of amazing news to celebrate and praise God for!  Ill highlight a few here as well as end with some prayer requests, because unfortunately there is some medical news (as of last night).

Praise God:

–Christmas was incredible!  Just being in Redding and celebrating our saviors birth and Braydens life was very very special.  It was a nice change from the last christmas living in the hospital:)

–Braydens 5th Birthday.  We went a little over the top on this one, with a Polar Bear plunge swim party (In Jan.) and snow cones etc.  It was Braydens first birthday with his friends being able to attend, so another very very special day that was filled with tears of joy.

–Braydens Tball (Yankees)… this too has brought tears of joy (and sadness, as Brayden is on the Yankees ) but he is LOVING it!  He is a great hitter and has a pretty good arm and ability to field and catch.  You can definitely tell that he is his mother’s son.  The kid is talented and its amazing to see him out there interacting with other kids and being a “normal” 5-year-old.

–Braydens Snowboarding.  Just this past week, I took a half day and took Brayden up to the mountain to learn how to snow board.  I know it shouldnt surprise us, but he was determined to go on a lift and go down the mountain by himself… and sure enough he did: STUD.

These last 3 months have been incredible and there is not a moment that goes by that we are not PRAISING GOD for the great things he has done (which is part of why I am bummed I havent updated more–because so many amazing things to share, and these quick sentences just dont do it justice).

Jen and I still have moments of fear (although we feel like they are becoming less frequent as the days go on:), but on one level another one last night….

PRAYER Requests:

–As I mentioned above, B has been doing incredible, I mean look at all he’s been up to!  But last night Jen discovered a bump on his lower neck/upper back (where the two meet–encouragingly this is not a lymph node area:).  And if you remember it was swollen lymph nodes that we found before relapse back in nov. of 10.  So to say the least this has our attention.

We have emailed the docs and sent pics and are waiting to hear back from them.  We honestly aren’t worried, but would much prefer it to be gone of course.  So we ask you to join us in praying for him diligently as we figure this latest thing out.  We know there are still odds (higher than we’d like) that the cancer could return–BUT we feel confident that this crap is done with and our job is now to proclaim the hope and healing of our Great God.

Bottom line is we are feeling good (would prefer this bump issue to resolve itself) but are extremely thankful for the life that we have and get to share with you all.  We called last year “happy cure year”, and we want this year to be “the year of the Lords favor” and proclamation of it!  Jen and I have been reading Isaiah (Braydens middle name:) together and this was part of the chapter we read last night:

61 The Spirit of the Lord God is upon me,
because the Lord has anointed me
to bring good news to the poor;^[a]
he has sent me to bind up the brokenhearted,
to proclaim liberty to the captives,
and the opening of the prison to those who are bound;^[b]
2 to proclaim the year of the Lord’s favor,
and the day of vengeance of our God;
to comfort all who mourn;

We are excited to continue to proclaim God and his goodness to the world.  To scream of his faithfulness and praise him for his healing of Brayden, as well as continue to pray diligently against the attack of the enemy (mentally for us as parents) as well as physically for B.  We are excited for the opportunities and occasions that we will have (many of which we have no idea about) this year to do this to any and everyone who is willing to listen…. To Him be the Glory for the things he has done and will do this year.

Thanks for continuing to battle with us (even in my quiet blog moments).

On one last note: there is a young gal who will be doing a benefit concert for Brayden and another boy who has been fighting cancer that she knows.  We will be trying to make it and would love to see some of you there, it would be great to say hello and continue to share of Gods grace and mercy personally.  Here is more info:

https://www.facebook.com/events/254510794628670/

 

Grace and peace to all of you!

ds

 

This weekend one year ago…

It was this weekend one year ago that we found out Braydens cancer had come back.  I still remember it all too clearly.  The week before was thanksgiving and then we had our dear friends visit us from Fresno.  We had been worried for the entire month of November in spite of the doctors encouraging us that nothing was wrong.  I remember the wed. (dec. 1st) asking for a bone marrow test just to simply calm our hearts so that we would know we could stop worrying like everyone was saying.  I remember praying over the results, and trusting God for the best possible outcome.  I remember driving over the hill on my way to work on Thursday morning, that very next day, when my phone rang and it was Dr. Sam with the news.  It was unbelievable then, and even today is still hard to completely grasp.  The next day: Friday we were back at Choc to begin the hardest year of our life to date.

And as unbelievable as that Friday was then, I have some similar “unbelievable” feelings tonight as I sit here one year later.  I just got home and put C down to bed as Jen and B are still out partying.  One year ago he was in the hospital–TODAY he is at his first ever slumber party–CRAZY.  I cant help but rejoice and celebrate the amazing 180turn which we are currently enjoying.  Brayden is eating well, and gaining weight (still not technically on the “charts” but is big enough to ride space/thunder/tower of terror etc.:) and he doesn’t look anything like the pictures from just 4-6 months before.  You wouldn’t even know the pain and trials he has faced the past 3 years by looking at him…Its honestly hard to type without losing it.

There are so many things I could write about, which is why I know I need to be more faithful to you the reader (especially as I covet and cry for your faithful prayers for B)… so Ill just throw out a couple of highlights and prayer requests.

–September and October marked days 140-200 post transplant and we reactivated our Disneyland passes which we froze since B was too sick to go, so we began making great use of those.

–Keeping with the Disney theme we went on Braydens second Disney cruise at the end of October and Had gma lynda and aunt Julie join us–it was a blast celebrating all that B had been through and conquered to date.

–November marked lots of family visits, which was great to have them come for something other than spending time in the Hospital or taking care of C etc.  TODAY is day 233!

We really have been trying our best to live life and gain more normalcy which is such a gift! I am even realizing that Brayden turns 5 in just over a month, AND starts kindergarten in 9 months–crazy!  And yet the last time I remember really having normalcy was the winter of 2010 and we all know how that turned out .  Which leads us of course to the continued prayer requests.

__ULTIMATELY CURE continued.  We really trust and believe that we are done with all this cancer crap!  But we also know the stats and they are haunting (highest recurrence comes in the first 2 years post transplant, so 700 days).  So we continue to pray persistently that God would continue to give Brayden long long life to be used to enjoy Him and share the love of Christ with any and all who would listen.

__Be praying for the continued rash and skin sensitivity that B has.  Docs have said it could be the rest of his life, but that we still need to watch closely for chronic GVHD as well as a preLeukemic rash.  So of course every time we see it, it causes concern etc.  We have been seeing a nutritionist which has helped us narrow down some food allergies that may be causing him to have skin reactions so we are thankful for the info, although the cost of eating gluten free and all the other things is crazy–but def. worth it!  Continue to pray against any and all long term side effects–including the ones I just mentioned as well as physical and mental ones from radiation etc.

__Going hand in hand with the 2 above: recurrence and rash etc. be praying for mommy and daddy and our emotions and more faith and deeper trust and enjoyment of each and every moment (I know that was like 4 requests in one, but you get the idea:).  It’s still really hard.  There are moments where we forget and can live life like a “normal family” but those arent frequent enough.  And don’t hear me say/write that being “normal” is the goal–because it’s not.  But living a faith filled life which trusts God for everything and enjoys anything and all that he provides is what we continually strive for while maintaining a love/jealousy for our boy like I cant even describe.

__Finally continue to pray for God glory in B’s life.  That He would continue to woo and call B to himself and use these amazing events in his life to develop an incredible relationship together which would deepen others walks and lead people to trust Christ because of B.

As I wrap up this quick post, I cant help but think of the “strange” way God chose to save the world by giving of his only son.  Being so close at times to losing mine it continues to blow my mind of the great love that the God the Father has for me.  And you.  I pray wherever you are, physically or spiritually, in this Christmas season that you can experience, enjoy and embrace that incredible gift.

Thank you again for waling this road with us! Blessings,

ds

 

Port comes out TODAY (within hours:)

Today is very very exciting!!!!  After battling cancer for 2 1/2 years (to the day, yesterday) at 9:30 this am Brayden’s port will be surgically removed.  This is the device that we prayed over back in April of ’09 that God would use as an instrument to carry his grace via chemo therapy.

It’s also a little scary:(  Surgery is always scary (just recently read of someone losing their battle in the midst of a simply surgery–never a fun thought)… but so is losing and removing this device.  We want to do it on confidence and trust that the docs wouldn’t let us remove it unless we were confident that we’d never need it again (but unfortunately they aren’t even that confident of this–as no one can be–and the last time they were, it actually came back).  But we have all decided it is the best thing to do for B, and medically there are NO current signs to show any fear of a close recurrence.  So we pray for that to continue and are thankful for it today in our current situation!

Braydens labs on Tuesday were very good again!  Not Great, but very good.  You know Jen and I and we only like having the best and can tend to be a little perfectionistic (maybe not her as much as me:), so I literally prayed for perfect labs on Monday night and we got a whole bunch of the results that didn’t come back in Quote un quote perfect range and rather were like LITERALLY .1 off.  Reminded me to pray for my desires, but be focused on what matters.  The labs only matter in the sense that they confirm what many of you have said when getting the gift of seeing his sweet smile and hearing his laugh–he LOOKS and SOUNDS AWESOME!!!!

SO we go into this am thankful.  Thankful for Gods plan and sovereignty and walking this road with us even after he paved it.  And thankful to you for praying us down it, and doing so again today.  I have a couple fo awesome stories to update you on, but I must run because we are supposed to check in for surgery at 7:30 and it’s already 7 and both kiddos are asleep (of course the day they actually sleep is the day we need to be out:).

Thank you all!!!

ds

 

Braydens visit with the Angels featured in full page of OC register this am:)

This morning after my early breakfast appt. one of the gentlemen from our church came in and said “hey drew, have you read the newspaper yet today?”  I of course responded no, since I was up and prepping for meeting at 530–so he handed me the paper and said “turn to page 7″… I assumed unsuspectingly that something had happened to my 49ers or Giants so turned the pages trying to prepare for the worst and then there it was–a HUGE picture of the coolest 4-year-old in the world: Brayden Isaiah Sodestrom holding a big old Torii Hunter bat and smiling for the camera during our BP visit last Tuesday!

I am in between meetings right now, so I can’t write a lot, but it was an awesome and incredible day for which we are very thankful for:)  Here is the article:

http://www.ocregister.com/articles/-320172–.html

Make sure you check out the pictures too as there are some really good ones.  I know I havent added nearly enough, so I will try to see if Jen can upload some more chronicling the past 6 months in particular as we approach Oct. 13th the big 6 month post Tday.

Today he is doing well, a slight skin irritation which could be simply from the flu shots he got OR a type of shampoo/soap.  Doesnt seem to be a rash, but of course always something we are watching like a hawk.  He did have some vomit on Friday last week as well, but none through the weekend so that was a plus.  Overall things seem to be going very well and last Tuesday was a celebration of that which we will continue on the 13th with something special (dont know what yet–but something) as well as the cruise coming up soon too:)

Thanks for all the prayers–blessing to you this fine (wet:) day!

ds

 

post#250: LABS are back:)

Just checking in for a quick update… THANKS for the prayers these past 36 hours as we’ve waited patiently on the appts and labs.

THEY LOOK AWESOME!!!!!!  Everything is pretty much right in range and looking exactly how we had hoped and prayed.  His weight was up to 14.4 and he grew over an inch since our last appt. so God is at work building up this sweet boy.  He has a little rash on his face, but nothing that gets the docs excited and could be related to diary, overall it was a GREAT day, although we spent lots of time in waiting rooms etc.

The pre surgery consult went well, now we just pray he gets in asap (ideally the next 2 weeks) before the shots he needs on 10/11.  Now we are packing up and heading down to Angels stadium for Batting practice and the game… sad that they are out of the race, but thrilled that Brayden gets to have this special opportunity!

Thanks for checking in and praying us through every moment.  Crazy to think that this is Blog post/update #250 and that we have had over 160,000 hits these past few years–the support is incredible and to God be the Glory for the great things he has and continues to do!

Blessings,

ds

 

A BIG week for B and a few other updates:)

This is a big week for Brayden… tomorrow (Tuesday) we have a doctors appt. at 1030 and at this appt. we will also get our labs done.  These labs are critical for multiple reasons.  First off we are coming up on the 6month mark from Transplant (about 2 weeks away), this is a time we will hopefully see excellent labs and a “normal” boys labs.  We saw this last time, so really we are just hoping for more of the same!  The mental battle continues for mom and I as we know that if the cancer were to return it will be highly likely to do so in these first 2 years… so every big marker is a “glory be to God” moment and 6 months is definitely one of those.

Assuming the appt. goes well and we get good lab results back, then we will have a 1:00 doctors appt. with our port surgeon, because they want and have approved to get the port taken OUT!  This too is a pretty big moment, as it implies that they dont think we will need it again:)  We will continue labs every month until next april, but we can do it peripherally and the only reason they would think we’d need it would be relapse… so assuming 2 months of great labs they will make this assumption:)

This would be awesome because Brayden has his “I kicked cancers butt–AGAIN” celebration cruise in Oct. and it would nice to have the port out by then so we could enjoy the trip without fear of fever and hospitalizations etc.  (the reason we get hospitalized with a fever still is because of the port/line infection fears, which as you all know are deadly for B).  If this all goes through seamlessly then well have the surgery before the cruise and also get all of his baby immunizations before the cruise too.  Remember for all intense and purposes his body is a baby’s after this reboot.  So we are simply coming up on our 6 month immunizations now.  And we would like to do these before the cruise so to not expose him to something on the boat.

Finally what makes tomorrow a BIG day is that we have been invited by the angels to head down to the field for batting practice on Tuesday night, so Brayden is PUMPED to say the least:)  and we are looking forward to an awesome family night together.  I am officially out of my busiest season for work, so we are getting more and more of those moments these upcoming weeks, which will be really nice.  Its too easy to fall out of focus on the most important things and get consumed with the rat race of life and the next thing and actually miss some of the best things that God has provided–such as my bride and boys.  Father forgive me for this this!

THANKYOU for and please keep praying physically for B:

-obviously for NO CANCER (I think this 6month milestone has reminded us of the reality that it could come back, so that is tough)  Although it is incredible to look back at our prayer chart and journals and be reminded of the incredible things that God has done and not be encouraged and become more confident of COMPLETE CURE!

-Weight gain… he was up to 14.15 kg yesterday which was great, but remember he was at 16.6 right before transplant, so thats still a lot of weight to have NOT gained back after 6 months.  But his appetite it good, so it will just take time.  On another physical growth side of things, Brayden has crossed the 40in mark at Disneyland, which is tiny for his age BUT awesome for his thrill seeking as there isnt a ride he hasnt LOVED, and of course encouraging for us too to see.

-Obviously for his labs tomorrow, that we will continue to see growth in healthy red and white cells and balanced organ functions without seeing any growth of negative stuff.

-Keep praying for mom and dad mentally… Brayden has been vomiting 3 of the past 5 weekends (although assuming nothing happened last night that I dont know about, we made it through this past weekend!).  The docs think this is still related to bactrim his only real med he is on now, but we (a) hate seeing him in pain, and (b) fear the worst as signs of leukemia coming back are often things that are not that uncommon for 4-5 year old boys: rash, vomit, fever, fatigue.  This past week Brayden has had GREAT energy, and doesnt typically nap when he is on ‘crack’ –but then the first day he does and is out for 2 hours (which is still normal for his age range and his body etc.) we have to battle allowing our minds to drift to relapse and other issues.  It is still incredibly tough and why we want to continue to trust the ‘voice of truth’ which has been so imperative for us every step of this journey.  And right now the voice of truth has given us incredible results to not just trust with faith but even blessed us to be able to trust with his present and current results!

-Please keep praying for Gods glory to be revealed in and to and through Brayden.  It is incredible to continue to talk and answer (in an age appropriate manner) the questions he has for us of spiritual significance.  He never was a typical 4-year-old, but because of all he has ben through I think his spiritual sensitivities are at an extremely high level, which makes for INCREDIBLE conversations with the boy.  There is no greater prayer for us than Brayden comes to a personal faith in Jesus Christ as his Lord and Savior, and we continue to be encouraged that this will happen as God will use this tragic 2.5 years to call and woo B to himself.  After this of course we pray that God uses him and his story/battle to minister to and change others!  And then of course prayer #3 for the complete physical cure to go with the spiritual cure to all of our conditions.  It’s hard to rank these prayers because they really do all go together for us (esp. 2&3) so we just keep praying for all of them diligently and THANK YOU for praying them as well:)

I know there is more stuff, but for now, I am just thankful to get a quick moment and put something down on paper so you can be encouraged and continue to battle with us in prayer.

THANKS!

ds

 

A few updates….

Sorry for the long delay but your assumptions are correct… things are going well, and incredibly busy, thus leading to less time to update.  But regardless, I do apologize, because we covet your support and prayers and want to keep you updated so you can continue on in this journey with us.

With so much time between the last update, it is hard to know where to start… so I will be a little sporadic in this update, but hopefully will give you some idea of where we are at as of today:)

It’s crazy to think that we are already at day 133 (on wed.), and that it was day 100 OVER a month ago!  In the past 2 weeks we have had a couple of highlights (and more than I am sure IM forgetting).  First the lows:  Brayden has had more vomit episodes these past few weeks than we have had these past few years.  We are hoping we have nailed it down to an allergy to milk… so no more ice cream or cups of milk–but so far, no more vomit either for the past few days!  Another downer has been the continued mental battle of fighting against the fear of cancer returning and coming back.  Its hard not to feel the back of his head for lumps (what we found when relapse happened), or read into pale skin (his daddy is really white:), or keep checking abdominal for swollen organs etc.  Every cough can drive you crazy, and it is a daily moment by moment battle.  Even this past week someone passed along alternative cancer treatments to me and it was hard to not ask God “why do I need these?!?!”  I thought we were dont with all the chemo crap etc.  And honestly, there is NOTHING that should be causing us to worry, yet its impossible not too  Again, like my last post/update–a daily battle to continue to trust and place our son at the Feet of Christ.

Today was no different…A couple of days ago Brayden broke my heart by asking if he could have a meeting with me (its my busy season at work, no excuse, I know) and if I would spend more time with him So I skipped the gym early this am and stayed home for breakfast and we had coffee and watched Soul Surfer–Brayden loves surfing/sharks.  It was pretty emotional for mom and I–way more than anticipated and led to a tough morning together as a couple, but we were able to captivate the thoughts and devote them to prayer and try to move on with the day.

Thanks for continuing to cover us and our boy in prayers.  Over this mental battle of fear and the physical battle of long-term side effects as well as the cancer in general and other malignancies (which is a long-term side effect of the chemo/radiation).

NOW ONTO THE FUN STUFF!!!!

Activities… We had our cousins 2 weeks ago and went to Joes Crab Shack (the krusty Krab according to B) and mini golf and disneyland (thanks keith!) and just had a BLAST–it was nice having people visit in our house, not for the purpose helping us out with the chaos.  Then this past week we went to the gym together (Brayden loves getting his cross fit on) and bowling and went to Braydens first ‘friend birthday party’ for over a year @ Chuck E Cheese and swam a TON @ home.  SO other than the vomit interruptions its been great!

And this week continues to get better because Uncle Jeff and Aunt Julie get to come visit for our birthdays (Julie and I share the same birth day, which always makes it extra fun)!

Financial Update(s)… We just got our (hopefully!) last bill from CHOC for 2011, and we are obviously praying and confident that it is the last one FOR EV ER… and we still have enough money in Brayden’s medical account to cover this final bill–PRAISE GOD and THANK YOU for your giving and support in this way.  We also have very few copays and medications right now (were down to every other week appts), so that too is a HUGE praise!  Our monthly expenses are still higher than desired due to Braydens food needs and our obnoxious electricity bill (due to needing to run the air for our special vents as well as some of Bs air machines), but somehow every month it all works out–so again: Glory be to God!  It is crazy to think that if everything continues on this trend we could end the year without any extra debt due to the cancer treatment and costs.  INCREDIBLE!

Brayden reminded me a couple of months ago that when we were in patient fighting like crazy kicking cancers butt, that I told him when we got out we could do anything he wanted.  I thought he would ask for Disneyland or something realistic, but no.  He asked for another Disney cruise (2 actually:)!.  Unfortunately due to their CRAZY COSTS, I couldn’t simply pull that kind of change out of a savings account, SO, I decided to apply for multiple grants and things that provided experiences for cancer (relapsed) patients–but to no avail until LAST WEEK!  Last week we got news that we were approved for a grant that would cover the cost of the cruise and combined with united miles and certificates, we are set!  And as of yesterday, we are booked and ready to go for an October Disney Cruise.  We of course arent telling B, because I dont want to have to hear every day for the next 2 months “when are we going dad!”–but we are excited and pumped for that morning when we wake him up and load in the car to head to the airport!  AGAIN: INCREDIBLE!

Medical Update… Not a whole lot to update.  He is doing great! So well that the last appt. we had the doc looked at him and said, let the PA see him because he looks AWESOME  We have doc appts. every other week and labs only once a month!  Which of course can lead us to worry, because we don’t know exactly how is is doing lab wise at a certain moment, but if the docs aren’t worried and clinically he looks and feels great, then neither should we!  His appetite is way up–although we aren’t seeing the scale jump up, his weight is up a little: slowly but surely!  His strength and energy continue to increase as well–and his hair is growing like crazy too; actually longer than mine right now.

Things of Spiritual Significance… Brayden has been an incredible instrument of grace in my life and I know many of yours as well.  There is truly not a day that goes by that I am not reminded of Gods love for me and mercy towards me via my son.  He has been making a few comments the past week that are simply incredible that Id love to share.  Just this past week, he said “Isnt today a great day!  A break from Cancer, and not nose tube, and just a day to have fun!  God sure does love us!”  What a reminder from a kid about carpe diem and enjoying the gifts God has given.  Of course we asked was today just a “break from cancer”? and he quickly responded–”oh no, we are done with that stuff.  Satan Lost and God won!”

I already shared that this morning was another tough bout on the mental side of things and yet even today God blessed us through B.  Jen and the boys were going to come meet me for a quick-lunch break around noon and although I had bounced back since our am, Jen had not–and was still just fighting the head game.  She loaded up the boys in the car and ran back inside to get something and then walked out to Brayden being out of his seat and in the driver’s seat.  He let himself out because he wanted to turn the radio up and rock out to “Our God is greater, our God is stronger, God you are higher than any other.  Our God is Healer, Awesome in Power, Our God! Our God!”  Jen video taped the whole thing and sent it to me at the office (I love technology) it was the coolest text ever!  Just another reminder that God is in control and ministering to us in the midst of any momentary affliction we may face.  He then went onto explain to Jen that God was “in Him” (nothing we have talked about personally with him:) and that he was stronger now because of it/Him!

There is a ton more, but its already 10:20, and I have an early appt. tomorrow, so bed is calling my name… I know I have forgotten things, so as I remember them I will try to publish them (although no promises:)

Until the next time (hopefully not 2+ weeks), Blessings of Grace and Peace to all of YOU!

ds

 

 

Daily Battle-thanks for being with us

Brayden is finally in bed… still feels vomity in fact rolled over during his movie pre bed and said to mom– “Im so tired of feeling this way!” Mom asked for clarification and he said that he didnt want to feel like he needed to throw up–tough stuff!

We forgot to get our antibiotic filled this week (downside of things going well, I guess:) and instead of waiting till tomorrow I am waiting for the phone call from on call ONC Doc to get it now and get it in him asap (just a weekend med), in case there is something that the antibiotic may help cover. So that leaves me with some “alone” time where I should be doing 1 of 2 things… Sleep or sermon prep/review for Sunday am. Problem is, I cant even bring myself to look at my notes, instead I am still reflecting on the last sermon I preached about picking up ones cross daily.

This evening when Brayden didnt feel crappy he wanted to ride his bike (the crappy feeling went away this afternoon and then came back later and went and is now back) and go get subway and ice cream. So we rode a little and got food for him as I am afraid that with his stomach hurting we will lose some of the progress we’ve made with food etc. and have that stupid nose tube back in with a couple of bad food days (one more thing to pray against–although I totally get where he is at not wanting to eat when he doesn’t feel good). All this being said we caved to ice cream on top of Subway because calories are calories

While we were eating Ice cream I saw a whole family come in and a 35 year old son offer his dad a cup… they were laughing and having a great time, seemingly without a care in the world and it got me thinking. How old would Brayden need to be to where I didn’t have my heart sink every time his bones hurt or stomach ached. And it was a bitter realization that I couldnt come up with an answer. 5? not even close… 15? nope… 25… prob. not either–35? Like this man in front of me with a grey haired father. Our kids will always be our kids, which is why it is so vital we trust our Father and remember the realization that they were HIS before they were ours.

We got home from Ice Cream and I took a bath (1st on since prob. the good ole ice baths of college–not fun ones:) and spent some time reflecting and praising God via Chris Tomlin (I love his earlier albums). Reminding myself that God is God and when he spoke he created the world. That his grace is enough. And that my life is his (every single aspect of it)… Jesus was clear to us about our battle. It was one which daily we would have to chose him, pick up our cross and follow in spite of any and all circumstances.

Its been a long, tough day. Part of what makes it so tough is the reality of feeling so spiritually attacked with not just Bs physical pain but our emotional and mental investment as parents. The attacks also seem to be so faithful to come right after a personal positive conversation about Gods glory in Bs life, or a blog update, or during a week of sermon prep. It honestly makes you just want to shut up and retire from vocational ministry and never share of the amazing things God has been doing and will continue to do that we don’t even know about (GOD WE THANK YOU FOR WHAT YOU WILL DO, FOR THE DELIVERANCE YOU HAVE PROVIDED AND FOR THE PEOPLE, WHO WE ARE CONFIDENT, WILL BE IN HEAVEN BECAUSE OF YOUR CHILD BRAYDEN ISAIAH SODESTROM! AND I THANK YOU IN JESUS NAME FOR THE CONTINUAL DELIVERANCE FROM THIS CRAP!) But shutting up doesn’t seem to be an option because thats not what the calling of Christ was for.

Even though it has been a tough day, it is still another gift from above and reminder of who HE IS and that He is in all of this. Brayden was his son even before he was mine, and I am privileged to call him ‘My B’ while I have the gift of being his earthly dad. Whether he is 4.5 or 94.5 he will always by my ‘B’ and a gift that reveals to me the love of the Father and deepens my trust in HIM. Thanks for continuing to battle with us, especially on a day when I was reminded that although we are at day 114, I am praying for 100′s of day 100 celebrations and thus the mental and emotional battle will be with us forever.

God thank you for your Son Jesus and thank you for mine B… tonight I ask for continued healing of these side effects and thank you for removing the cancer and being the great physician in Bs life. I pray for a covering of my heart and my families mind and for deeper trust, for more faith. TONIGHT and tomorrow and forever more. We know you are faithful to answer and give us the things that will bring you glory, so may that simply be our faith; which we need more of; and complete cure. For your glory we pray these things–AMEN!