quick update

I am walking out the door for a mtg. so I will try to update more later, but here is a quick quick one….

We have tests (blood etc) this morning at 9:10, if these labs come back alright we will get to leave for vacation on Thursday which we all are really looking forward to 🙂 A Couple of things could show up in which they either tell us, no dont go–or we need to do another transfusion which would simply delay trip a day or two.  We all would like a rest, so please pray with us that it works out–although far more importantly is that he is doing well, so hopefully we will get those desired results today/tomorrow.

I will be able to sit down on vaca and give a more full update about what the next 3 years will look like (because we now know).  We are so thankful to be at the end of these 6 months of intensive chemo!!!  The effects of all this hard stuff should have just started hitting us.  And although we see some of it (his hair is back to falling out again–but not all gone 🙂 AMAZING, for us and in the eyes of the doc–glory be to God)… for the most part he is doing GREAT again, and the docs continue to be amazed at how well he is doing.

THANKS for all the love, support and prayers and fighting this fight with us

SODESTROMS

 

2 more days… only 30.5 hours

Its as if we are keeping track of when these hospital chemo ends or something 🙂

Today’s appt. is at 2 and then tomorrow at 11am Saturday.  Overall Brayden seems to be doing pretty well.  His numbers have bottomed (expected, but still a sad part of chemo) out so potential infection is one of the biggest concerns.  He also had such low counts that yesterday he needed a transfusion 😦 this is definitely expected but something we always like to avoid.  Although we were encouraged by the fact that the doctors were surprised this was his first one since induction (over 5 months).  So like we said, doing as well as can be hoped for.

These 2 appt. are suppose to be pretty simple, 2 hours or so, so that will be nice and then after Saturdays they will take out the port access which just makes life easier.  For the next 5 nights we have more oral chemo at home, which continues to go fairly well–so please pray with us that he continues to like the taste of coffee for at least 5 more days.  Then on Wed. we will celebrate being “done with this phase” minus 3 lab appointments to check his blood/counts etc.

This week we have started to expereince more and more of the symptoms from the chemo: vomiting, tired, anger, some leg pain etc.  This will continue and grow over the next few weeks until maintanence begins (hopefully around the first week of October).

Thanks for the continued prayers and support, I will keep trying to update this as much as possible.

DS

FORGOT TO MENTION the ultrasound tests came back and not cancer hiding in the testes 🙂 PRASIE GOD!!!!

 

First half done

Well today was day 4 of our “8 [hospital days] chemo in 11 day stretch” (four on, 3 off, four on).  It was a long day because the normal short appt took significantly longer due to the fact that is was in the hospital since the CHOC clinic was closed 😦 but we made it!!!!

While we were at the hospital the doctor wanted to do another ultra sound on Brayden’s MAN parts.  This is one of the places the cancer can hide so we are appropriately anxious about the results (we hope to get them by Monday, but the holiday weekend could delay things).  So please pray with us while we wait.

The good news is the first half is done!!!  During the past 4 days they left the port accessed so today it is finally out till Wednesday which makes wrestling and showers possible so that is another bonus.  He is also taking these new oral meds very well with coffee: decaf and black–he is more of a man than I am!

 

Day 3 today…

Excited that this morning is day 3 of this new phase, although part of me feels like it should be day 30.  The first day went great, we were in the hospital ALL day but made the best of it.

Because we knew it was going to be such a long day we brought some special gifts for the little man–specifically 2 min RC cars (remote control) he was the champ of Choc as all the doctors and kids thought he was so cool 🙂 he even shared with his daddy and showed a little girl how to play cars.  We watched movies and of course took a nap, which for mommy doesn’t get to happen very often so that was nice too.  His little body did GREAT and we were discharged by 5 pm, home by 6 and had dinner and meds by 7–so overall a very good day 1.

Night time of day 1 was rough as was day 2, which is probably why I’m so tired.  They left him accessed which means there are cords coming out of his chest from his port and makes for him being a little uncomfortable and awkward.  It also means every time he rolls over I (as the overprotective, paranoid dad) freak out and try to role him back.  Unfortunately the meds have made him hyperactive (weird for him huh? please note sarcasm!).

So far so good, no side effects.  Although the doc warned us that it would probably take 7-10 days to start really seeing them and from here on out for the next 3 months we will start to see the cumulative effects of all the chemo over the last 5+ months.  But they, and as a result we, continued to be incredibly encouraged by how well he is doing.  They tested his bone marrow again and the CSF was clear (so cancers not hiding in the marrow 🙂 )

Today chemo is at 1:30 and tomorrow at 11 am.  Then a few days off and then four more days in a row at hospital.  These 2 weeks we are on chemo at home, which means back to Jen no touching meds and trying to avoid diapers (bummer for her I know).  Please keep praying for strength and endurance for Jen and I as we are continually geting a little more tired each day.  Also pray to protect our minds and hearts as even when news is good Satan casts doubts and concerns about long term prognosis etc.  And then of course please pray for Brayden and his strength, physical healing and ultimate proclamation of the Glory of God to any and all who will listen (today and the rest of his life).

Thanks for the prayers and support, hopefully when I updated this tomorrow afternoon we will be in an even better spot as they will take the port access out after chemo Sat!!!  And I know I FAILED at adding the videos so I will try that too later 🙂 thanks for the patience

 

Big BOY Chemo starts tomorrow…

WE were suppose to start this 2nd part of phase 4 last Friday but Braydens counts were too low (his immune system ANC wasnt strong enough to handle to chemo given during the first day) so they postponed it until they recovered.  This wasnt really unexpected but definitely not what we wanted as we would love to just get through this difficult phase–but whatever was/is best.  They told us to retest in a week, we tried on monday 🙂 and sure enough his counts had recovered.  The ANC needed to be at 750 and he was 752.  The nurse said she was surprised they recovered so fast–we weren’t–just very thankful.

So tonight we fast, and tomorrow morning at 8am we get to choc for our 9am Procedure.  This chemo is suppose to be pretty hard on little man, so please keep us in your prayers.  Some of the side effects are flu like symptoms which would surely send us to a hospitalization etc.  But that is what we are praying against and would love for you to join in with us 🙂 although it is what the doctors have expected all along we know our God can handle any and everything.  They plan on keeping him all day (still not sure what that means exactly) but hopefully discharging him so we can spend the night at home.  Then we have chemo the next 3 days in the hospital (TR, FR, SAT).  Then off for Sunday-Tuesday and back for another 4 days of Chemo in the Hospital.  All while being on new at home meds/chemo.  So a rough next 11 day stretch, and really next 4 weeks as the chemo has continual lingering effects.

We feel appropraitely confident and cautious, continually trying to trust God and thankful for all that He has done for us and continue to do so in healing our little boy 🙂

I will try to update this tomorrow as we get home, and daily throughout this rough stretch.  We definitely feel like we are in the last stretch of the 1st marathon (since we know 3 years will follow) but are so thankful to be where we are and excited for October to come… because that means Brayden will be in maintenance and the Giants will be in the World Series (B and I are dreaming at least).

Love you all, thanks for the support!!!!