Brock Rocks

March 26, 2010

17 months old

Filed under: Uncategorized — Vanessa @ 9:36 pm

Brock turned 17 months old yesterday.  When you have an appreciation of how precious life is, you celebrate birthdays more than once a year.

11 months old  (11 days before diagnosis)
sep 09 (50)

12 months old
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13 months old
nov b 09 (145)

14 months old
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15 months old
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16 months old
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17 months old
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March 25, 2010

Big Decisions

Filed under: Uncategorized — Vanessa @ 11:09 am

We met with our oncologist yesterday to discuss what we’ll do next with Brock’s treatment plan.  He’s due to start a phase called “Delayed Intensification.”   It has a lot of the same drugs that he got during the Induction Phase (the first three weeks after he was diagnosed) plus some new ones that he’s never had before.  It’s pretty intense chemotherapy that would last 8 weeks, with the last 4 weeks being harder than the first. 

There are 6 oncologists in the group and they haven’t really come to a consensus on whether or not we should do Delayed Intensification.  One side thinks we need to do it because if we don’t then he’s at a greater risk of having a relapse.  About 15% of standard risk ALL patients that don’t do DI have a relapse.  (And remember – Brock has some markers that make him standard risk and some markers that make him higher risk)  The other side thinks we shouldn’t do it because the chemo is so intense that it would wipe out his immune system and the fungal infection would get (potentially fatally) worse.

We didn’t make a decision about DI yesterday because all of the oncologists were in agreement that he needs to have surgery on his lung first.

The last CT scan showed that the area of infection in his lung has consolidated down to about the size of a clementine orange.  (It also showed that his liver was clear, his kidneys looked ok, and his spleen still had a considerable amount of infection…but we’ll worry about that later)  The area that is infecting his lung has walled itself off…meaning there is still active infection inside but the antifungals that he gets everyday can’t reach it.  The only way to get rid of the infection is with surgery.  Most of the infected area is in the pleural cavity, but there is a part that’s attached to his lung (meaning they’ll have to remove part of his left lung).  They have to make an incision and go through the ribs.  He’ll need to have a chest tube after the surgery and possibly be on a ventilator for awhile.  It will be, by far, the most extensive and most painful surgery he’s had.  (It will also make surgery number 7 in less than 6 months).  Our surgeon is WONDERFUL and I feel very confident with Brock in his hands.  We haven’t scheduled the surgey yet.  Brock got chemo yesterday so we’ll have to wait for his counts (immune system) to recovery first.  It will most likely be right before or right after Easter. 

It will take several weeks to heal from the surgery and then we’ll make a decision about Delayed Intensification.  Please pray that God would give us and the doctors the wisdom to make the right decisioin.  We’ve known since November that treating the fungal infection and the leukemia was going to be a difficult balancing act, but until now we haven’t had to make any big decisions regarding treatment.  To have the weight of a decision that might adversely affect Brock’s health on our shoulders is very overwhelming, to say the least.

So, to sum things up: surgery in the next 10-14 days and chemo a few weeks after that, but we still don’t know what type.

March 23, 2010

Filed under: Uncategorized — Vanessa @ 4:10 pm

Well, the fever continues so we went back to the clinic this morning so they could draw more cultures and do a CBC.  Thankfully, nothing has grown on any of the hundreds dozens of cultures we’ve had drawn lately.

Brock gave us a little bit of a scare this morning.  At 4:30 I woke up and he was having very labored breathing.  (His breathing was so loud that THAT’S what woke me up)  He had nasal flairing, mild retractions, mouth breathing, belly breathing…all signs that he was working too hard to breathe.  I put him in our bed with Jay and got in the shower to get ready to take him to the ER.  I prayed the whole time I was in the shower that God would slow down his breathing…make it easier for him to breathe…that God would breathe HIS life into him.  When I got out of the shower he was still working kind of hard but it wasn’t nearly as bad as before.  The nasal flairing and retractions had gone away.  So we watched him for the next hour or so while he slept and when he woke up he was fine.  Fine for him at least.

I told them about it when we went to clinic for cultures and they said it’s probably just an upper respiratory infection and that it’s harder to breathe when he’s laying (lying?) down.

Then we had an appointment with the opthamologist.  When he was seeing us in the hospital, he was just dilating Brock’s eyes and then looking at the retina, nerves, etc in the back of the eye.  This time they did a full eye exam (in addition to dilating, looking, etc.) 

The results are:
– no active fungal infection in his retinas.  just scarring.  (praise the Lord!)
– the scarring that’s in his right eye will affect his vision.  it’s like he has a blind spot in that eye – not something that glasses can correct.
– he has some nearsightedness and astgimatism and will need glasses within the next year.  (how cute will that be?!)
– they don’t think the head-tilting thing has anything to do with his vision.  so that’s still a mystery.
– follow up appointment is in 6 months.  SIX MONTHS!  i can’t explain to you what it felt like to make an appointment that far in the future.

When we were leaving the exam room the opthamologist told us how great it was to see us in clinic instead of in the hospital.  He said that he had been VERY worried about Brock back in November when the whole fungal infection thing was raging.  (That makes two of us, buddy)

So, we’re still praying for the fevers (and whatever is causing them) to go away and tomorrow we meet with our oncologist to discuss treatment plan. 

Thank you so much for continuing to pray with us.  We love reading all of the comments you leave.  It’s so encouraging to us to read what you have to say and know that someone else loves Brock (almost) as much as we do.  😉

March 22, 2010

“It was a great day…it was a super way…to spe-end…some time together…”

Filed under: Uncategorized — Vanessa @ 8:39 pm

If you know what the title is from, I’m sorry.  You’ve been sucked into subjected to The Fresh Beat Band as well.

Tonight we had one of the best evenings we’ve had since October 6th.  Jaycie has been asking us since before her birthday (over a month ago) if all four of us can go eat at The Peanut Place (texas roadhouse).  Since Brock hasn’t had any chemo in over a week, his counts are great and we felt like it was safe to take him with us.  About 23 seconds after we sat down Jaycie declared “I love this!”  (Though it’s hard to tell if she was referring to dinner as a family of four…or the cinnamon butter smeared roll she’d just popped into her mouth).  Either way, it was a great time.  And I loved it too.

Afterward, we stopped by Target for some milk and kleenexes.  Fifty dollars later (how does that always happen??) we were leaving the store, shopping basket and hearts equally full. 

There is such a huge difference in how Brock acts and feels when he hasn’t had chemo in awhile. 

This was him the day after his last dose of chemo.
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And this was him 2 days ago.
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Tonight, he was even better than that picture.  He was laughing, smiling, dancing, interacting with us.  It was so nice to see a glimpse of the “real” Brock, before he gets stolen away again on Wednesday.

Wednesday is a big day.  We’ll be deciding with the doctors about what treatment he should receive next.  There are careful studies done on the most effective way to kill leukemia…which drugs should be given and in which order, all depending on the type of leukemia the child has and their age at diagnosis.  Because of the fungal infection, Brock can’t go forward with the type of treatment that he’s “supposed” to have – the type that has been scientifically proven to be most successfull at treating the leukemia that Brock has.  It’s a little bit nerve wracking to feel like you’re “winging it” as far as treatment goes.  We’re praying for guidance for the doctors as they decide what to do next and that whatever they do decide will be just as effective as what he was “supposed” to have gotten. 

By the way, if he’d never gotten the fungal infection, he would be about half way done with treatment.  As it is, he has several more years worth of chemo to receive.

I’m not sure how I ended up on that tangent.  The whole reason I wanted to post tonight was to share with you all what a FANTASTIC evening we had.

And to wrap things up, a few more pictures from the past week…

Brock was not too impressed with the snow.
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Soccer Star and Sassafrass
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I. Hate. Fevers.

Filed under: Uncategorized — Vanessa @ 12:53 pm

Brock got another fever this morning so we had to take him to the clinic for blood cultures, a CBC, and CMP.  Please pray that he’ll stop having fevers because it is so. annoying. to have to go to the hospital every single day.

March 20, 2010

Snowed-In Saturday

Filed under: Uncategorized — Vanessa @ 10:47 am

Jay and Brock made it back home around 11 last night.

March 19, 2010

Fever

Filed under: Uncategorized — Vanessa @ 7:38 pm

Brock got a fever tonight so Jay is taking him to the ER so that they can draw cultures and do a CBC. Hopefully they’ll be back soon. (We have 4 hours worth of iv meds to give once he gets home)

March 18, 2010

Homecoming

Filed under: Uncategorized — Vanessa @ 2:12 pm

Yay!  We’re coming home today.  Here’s the latest update, bullet-style.

Lungs
– CT scan showed no pneumonia
– they don’t look great, but they look good for Brock.  about the same as the last scan

GI
– the GI team is running some tests (looking for protein in his urine or stools) and is going to follow up with us through clinic.
– they might do some type of 24-hour scope/study to evaluate his reflux and see how bad it really is.  they’re thinking that if we can feed him through his stomach instead of his small intestine that it might help with the diarrhea.  but before we can do that we need to know exactly how bad the reflux is.

Vision/Head-tilting
– we’re going to see the opthamologist on Tuesday for a routine check of the fungal infection in his eyes, but we’re also going to talk to them about the head tilting thing.  it seems like blurred or double vision is the most likely culprit.

Prayer Requests (besides the things above):
– Brock’s platelet count has been dropping.  It was 140+ on Monday and it was in the 40s today.  (150+ is a normal range and he gets a platelet transfusion for anything less than 20).  It’s not unusual for your platelet count to drop while on chemo, but it’s rather concerning to us because Brock has had problems in the past with his platelet count taking FOREVER to recover.  He had 40 platelet transfusions in about 2.5 months.  The doctors were concerned at one point (in Nov/Dec) that it might never recover (which would be a very, very bad thing).  So in short, pray that his body starts making platelets soon.
– We meet with his primary oncologist on Wednesday to discuss the next round of treatment.  His protocol calls for him to get some drugs similar to what he got in the very beginning.  The concern is whether or not his body will be able to handle those drugs and fight the fungal infection at the same time.  It’s a very delicate balancing act.  Please pray for wisdom for the doctors and for peace of mind for us.

Thank you for praying with us.  We love you!

March 17, 2010

out of surgery

Filed under: Uncategorized — Vanessa @ 1:17 pm

brock did great in surgery. they found two places that were bleeding and cauterized them. they also took some fluid from his sinus cavity to send for culture.

we’re still waiting on the official results of the ct scan but the resident that i talked to this morning said that his lung and abdomen looked about the same as the last scan.

so now the two most pressing concerns are getting him to gain weight and figuring out why he’s doing this head-tilting thing. we’re going to consult with GI about the weight issue and i’m not sure what they’ve decided about the the eye/brain/head-tilt thing. i’m still waiting to talk to the doctor today.

March 16, 2010

CT done, OR tomorrow

Filed under: Uncategorized — Vanessa @ 5:13 pm

We got the CT done today but won’t have an official reading on it until tomorrow.  The oncologist looked at it and said she thought it looked “ok” but that she wasn’t exactly qualified to give an official report on it, especially given all of the complications that Brock has.

The ENT is going to scope his nose tomorrow to try to figure out why he’s been having so many nose bleeds.  They’re going to do in in the OR just in case they see something that needs to be a cautherized.

We’re also trying to figure out why Brock’s been tilting his head to the left so much lately.  The oncologist said that he could be having some double vision as a result of one of the chemo drugs (vincristine).  She’s going to talk with Brock’s eye doctor and decide if they need to do an MRI of his brain to see what’s going on.  Depending on whether or not they decide to do that, we might be able to go home soon.

The lady from the Children’s Miracle Network called today and said that Brock is scheduled for a photo shoot on Friday to be in their Miracle Child Calendar.  (Did I tell you guys he got selected for that??  I can’t remember.)  So hopefully we’ll be out by then.  (Although it’s not really a big deal if we’re not – they’ll just reschedule).

Off to eat dinner with Jaycie.  More updates tomorrow.

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