Brock Rocks

June 22, 2010

good

Filed under: Uncategorized — Vanessa @ 9:37 pm

things are good.  i’ve just been taking a much-needed breaking from updating everyday.  i have lots of pictures to show of you of the things we’ve been enjoying during the 2 week break brock had from chemo.

he started the last phase of chemo today.  maintenance.  it lasts until 2/8/13.  that’s not a typo.  he will be 4 1/2.  the same age jaycie is now.  i can’t imagine.

we went to clinic today for a spinal tap (that didn’t work) and iv chemo.  THE dr there (read: the boss doctor) said to a PA “so brock made it to maintenance, huh?”  huh, indeed.

and thank you, Lord.

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June 9, 2010

Home Again, Home Again

Filed under: Uncategorized — Vanessa @ 10:17 pm

We made it home Tuesday evening.  Praise the Lord!  Words cannot do justice to how nice it is to be home for 24 hours.  I’m praying we won’t have to go back for a long time!

The infectious disease doctor gave us the ok to switch one of Brock’s antifungals (vfend) from iv to oral (or more specifically, through his j-tube).  Yay!  Like I said earlier, that eliminates 4 hours a day that he has to be hooked up to an iv.  We have a whole weeks worth of that iv med at home so instead of throwing that $500 down the drain we’ll finish using it this week and switch to the oral med next week.

The other antifungal that he gets (ambisome) isn’t available in an oral form, so we’re praying that sometime in the near future he’ll be well enough to stop that one all together.  But who knows.  It could be years from now before that happens.  He’s been on both of those antifungals for about 7 months, and has therefore had his port accessed every day.  If we could stop this last iv drug his port wouldn’t have to be accessed and he could do “real kid” stuff like go swimming.  Or hey, take a bath everyday.

Jaycie is beside herself with excitement about Brock being home.  We went out to eat last night and she got up from her chair and went around the table to give him a hug no less than 7 times in the half hour we were there.  Some ladies from Sooner Start came out today to evaluate Brock and when one of them said something to Brock about wanting to take him home with her Jaycie promptly spoke up and let her know that no such thing would be going on.

The evaluation went well, by the way.  They’ll come out next week to set up plan of care, set goals, etc.

June 8, 2010

Fundo/G-tube update

Filed under: Uncategorized — Vanessa @ 5:35 am

The surgeon didn’t come by yesterday, but he did talk to one of the oncologists, who then relayed his message to us.  He thinks doing the fundo and g-tube is a good idea, he just isn’t sure it’s possible.  He said it couldn’t be done laproscopically and they’d have to make a decent sized incision in order to be able to manipulate the stomach the way they need to.  The recovery would be similar to (or maybe even a little harder) than when he did the thoracotomy back in April.  So – it’s a good idea and it would probably be in Brock’s best interest but the surgery is kind of a big deal.  He doesn’t want to do it right now because of the recent redness/irritation/possible infection that Brock’s had around his g-j tub site.  He’d like to try to do it a month or so from now to time it between doses of steroids during maintenance. 

Pray that we’d have wisdom about if this is the best thing to do for Brock.

I know a few of you have kids that have a fundo and g-tube and I know others of you have kids with a j-tube.  Any thoughts/opinions?

June 7, 2010

Delayed Intensification: Done!

Filed under: Uncategorized — Vanessa @ 2:20 pm

Yesterday was Brock’s last day of Delayed Intensification (the last really hard round of chemo).  We’re so thankful the Lord brought him through it.  Yesterday was also 8 months from the first day that we brought Brock into the hospital.

See, I started off with a nice paragraph there and now my brain can’t think of what to do next.  Back to bullet-style.

– Brock’s blood counts all look great.  Hemaglobin, platelets and AGC are all within the normal range.

– We’re stopping one of the antibiotics today (vanc) and stopping the other one tomorrow (meropenem).

– After his last dose of meropenem tomorrow, we get to go home!!!!  Praise the Lord!

– The hem/onc doctors are talking to the infectious disease doctors about if it would be ok to switch one of Brock’s antifungals from iv to oral (or through his j-tube).  This would eliminate 4 hours every day that Brock has to be hooked up to an iv. 

– The hem/onc doctors are also talking to our surgeon (who we love!) about if it might be possible to replace Brock’s g-j tube with a g-tube and try again to do a fundoplication.  With the g-j tube the food goes to his intestines and has to be continuous.  With a g-tube the food would go to his stomach and he could be fed intermittently.  Theoretically, it would be easier to try to get him back to eating by mouth with a g-tube (b/c he would go for periods of time without any food and would actually be able to feel hungry – something he probably doesn’t feel with the continuous feeds).  BUT, his reflux is so bad that he can’t have a g-tube without having a fundoplication done.  The last time they tried to do one (in January), the surgeon wasn’t able to do it because everything in his abdomen was “stuck together.” 

Have I completely lost you yet????

The point is, we want the fundoplication and the g-tube, but aren’t sure if it’s possible or if the surgeon is willing to try to do it again.  He should be coming by to talk to me some time today.

When Brock starts the last phase of chemo (maintenance) depends on if and when they want to do the fundo/g-tube surgery.

– Brock has been SO happy and playful the last several days.  We’re praying that he stays that way once we get home!  I’m sure he feels more comfortable and ‘at home’ up here on the hem/onc floor than he does in his own house.  I haven’t figured it up, but I would guess that in the last 8 months, he’s spent about 6.5-7 of them in the hospital.  Of course he feels more at home here!

– Thank you for continuing to pray with us!

June 3, 2010

i hate trying to think of a title for each udpate

Filed under: Uncategorized — Vanessa @ 2:12 pm

– AGC was zero yesterday.  it’s up to 90 today.  thank you, God!

– his belly is getting bigger so we did an xray of it yesterday.  figured we might as well xray his lungs while we were at it.  nothing significant showed up on the abdominal xray.  lung xray showed a tiny bit of something on his lower left lung.  could be pneumonia (he’s already on the right antibiotics for it), could be a little collapsed from the thoracotomy (where they removed part of his lung).

– the skin around his g-j tube is pretty red and irritated.  so they cultured it yesterday and also did an ultrasound of it to see if there was a build of up fluid underneath it.  there wasn’t.  praise the Lord!  don’t know anything about the cultures yet.  they’re having the infectious disease doctor consult on him b/c of it.

– today is his last day of iv chemo for awhile.  yay!  he gets oral chemo until sunday and then that’s it for delayed intensification!

– he’s been really happy and playful the past two day and we’re so thankful!  he waves bye bye to everyone now (and if he’s tired of a doctor/nurse/therapist being there he waves bye before they’re even ready to leave).  he’s also started lifting his hands up in the air and shrugging his shoulders when you say “where’s daddy?”  or “where’s sissy?” or “where’s miss amy?”  or “where’s (insert any name/object)”  so. stinkin’. cute.  i’ll try to get a picture of it soon.

– God is so good.  on wednesday we got a bill in the mail from the hospital for $85.  we also got a refund check from my eye doctor for $95.  (i can’t even remember the last time i went to the eye doctor…much less paid him any money)

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