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No one fights alone

Saighdiuir de na Capall
Landrix
Saighdiuir de na Capall
Posted On: 02/18/2015 at 11:24 AM

Hello, I probably don't know most of you as I joined the family only recently for the launch of ESO but from what I did experience it was good. I only regret that I didn't get to experience past chapters with you guys as I played those MMO's (Warhammer & Rift); we just never found each other.

I usually keep to myself, I'm shy and it takes a bit before I warm up to people, so I've been struggling with sharing a chapter of my life that started recently. I want to credit Nash and those that have given him support for indirectly encouraging me to share something this personal and difficult.

The weekend before Thanksgiving I took my son into a chiropractic to address a limping that he'd been exhibiting at daycare. His skeletal structure checked out, but they wanted us to immediately follow-up on a lump they could feel in his pelvic region. A visit to an urgent care clinic and sonograms turned into admission to a hospital for more imaging and in 48 hours we had a diagnosis of Stage 4A Neuroblastoma.

Out of all the things in my life I think I've prepared myself for, this didn't make the list; and never before have I felt so powerless about something that affects someone so close to my heart.

Fortunately, what he has is common enough to already have an established treatment protocol and he's gone through 4 out of 5 rounds of combo-chemotherapy. Our next step is re-imaging to see how far we've come as at the time of diagnosis, the tumor was too large to remove. Other than the hair loss you couldn't tell him from any other threenager. He still fights bed-time, wants a constant diet of hot-dogs and pancakes, and rides his bike through every puddle he sees. In some ways this makes the reality of his diagnosis surreal, as if it only exists in times like this when I'm talking about it, or when I'm looking over literature given to us by the Dr/Hospital.

My wife and I have created and maintain a FB page so that those interested can keep up with his journey: http://www.facebook.com/riverbexar

Any positive thoughts/vibes/prayers would be greatly appreciated.

Last Edited on: 04/02/2015 at 01:51 PM
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Response:

Bandraoi de na Griobhta Dearg
Izzy
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Replied On: 02/18/2015 at 11:46 AM PST
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Praying for you and yours and sending as much of my strength as I can spare.

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Curadh de na Iomproidh Oráiste
AlanM
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Replied On: 02/18/2015 at 01:40 PM PST

I am very sorry to hear it Landrix, my thoughts are also with you.  

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Tiarna de na Iolair Corcra
Jairone
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Replied On: 02/18/2015 at 04:48 PM PST
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My best wishes and support to you and your family.  It sounds like he is handling this fine, and I hope that everything get's back to normal before you realize it!

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Bel
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Replied On: 02/18/2015 at 05:15 PM PST

Let sis and I know if you need anything Landrix. Though we can never fully understand exactly what you are dealing with because it is your son, we have been on the other side of a child watching a parent go though it. we both understand that sometimes just a listening ear can make help......or beating up a bunch of reds in WvW to help release some frustration!

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Isha
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Replied On: 02/19/2015 at 05:14 AM PST
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Life seems especially cruel when a young child is diagnosed with cancer.  Praying for his speedy recovery and your family's strength to get through this.  

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Morigana
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Replied On: 02/19/2015 at 06:23 PM PST

I'm sure all of out thoughts, well wishes, and prayers go out to you and yours.   We are here if you need a shoulder to lean on or someone to carry you for awhile - we do all need help sometime and you don't have to fight alone... we've got your back, your side, your front... where ever you need us.   /hug  

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Ban Fine de na Capall
Ketou
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Replied On: 02/21/2015 at 08:57 AM PST

Prayers and positive vibes sent your way, for your son and your family.

 

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Banlaoch de na Griobhta Dearg
Briseadh
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Replied On: 02/21/2015 at 09:34 AM PST
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I'll be praying for you.  If you want to be on my church's prayer team list for this, just send me a private message through the site and I can add him in.  I leave this option open to anyone that wants it and the church knows I have all sorts of friends through the internet that they have prayed for over the years.  =)

I always like how sick kids still want to be kids.  Us adults can learn a lot from them!

Don't mess with Mama Bear, I might hug you too tight. =D
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JaeOnasi
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Replied On: 03/05/2015 at 09:09 AM PST
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Hi, I just saw this. The good news is that neuroblastoma is very treatable. The bad news is it's still cancer, and that sucks. My sister so far has beaten stage 4a thymoma. If you haven't heard about CaringBridge.org, I highly recommend it to you. It's free for everyone to use (they run on donations). My sister and her family found it much easier to manage information and social media this way.

Hugs to you all!!

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Saighdiuir de na Capall
Landrix
Saighdiuir de na Capall
Replied On: 03/31/2015 at 09:25 AM PDT

Thank you all for the support and kind words.

Post round 5 of chemo imaging revealed that the tumor had shrunk 50%, and while that is a dramatic reduction in size, it wasn't as much as the doctor had hopped. We went through another round of chemo that resulted in minor shrinkage to only a third of the tumor mass; again, progress, but not "optimal". It was decided to attempt resection(removal) of the tumor, or as much as possible without harming any of his organs/major arteries.

I write this post from the surgery waiting area, he just went in and they're expecting a 3-4 hour surgery with a 5-day recovery period, pending any complications.

I have the night shift so you should expect an update after the dust has settled.

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Foghladha
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Replied On: 03/31/2015 at 09:30 AM PDT
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Praying for you my friend. Hoping for the best. Hang in there. Some progress is still progress.

"It's not the loot and accolades you walk away with, it's the memories and friendships that you cherish forever." - Foghladha
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Ridire de na Capall
Valin
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Replied On: 03/31/2015 at 10:40 AM PDT

My prayers are with you - stay strong.

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Saighdiuir de na Capall
Landrix
Saighdiuir de na Capall
Replied On: 03/31/2015 at 10:23 PM PDT

We're now out of surgery and in the PICU for the next few days, he was in surgery for the better part of 7 hours. The surgeon confirmed that none of his organs that the tumor was near had any damage and they were able to remove those masses, which is great news! They removed an estimated 40% of the tumor, stopping at the lower portions because it's wrapped around veins which are very fragile and the risk was deemed too high to attempt removal.

They juggled his intestines around a bit and the incision goes from the bottom of his sternum to past his naval, so pain management is top concern for the time being. For at least the next 48 hours he's going to be sedated as he's on a ventilator and they're keeping his stomach pumped of any fluids.

It's pretty rough to see him with all these tubes in him. I *know* what he's fighting , but so far, with the chemo, you just don't see that battle reflected on the outside. Yes there's the hair-loss and occasional vomiting (we're lucky in this department), but he's always maintained a very high spirit and energy level that sometimes leaves you wondering about his diagnosis.

 

Tonight and tomorrow will be relatively easy with the sedation; but as tubes are removed and he comes to full consciousness, it's going to get bumpy.

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Curadh de na Iomproidh
Llew
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Replied On: 04/01/2015 at 12:41 PM PDT
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Sending prayers for a quick recovery for the little fella....and a little extra Maine Mojo for the rest of your family too.  

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Saighdiuir de na Capall
Landrix
Saighdiuir de na Capall
Replied On: 04/01/2015 at 10:21 PM PDT

Today went well, around noon they took him off the ventilator and soon after reduced the sedation slowly until they stopped it altogether. He woke around 1400 and was asking for mom and dad.....and Thomas the Train :P

The Urinary catheter and arterial IV (for BP monitoring) was removed so now he's down to three lines, but that's progress. He drifts in and out, coming to enough to ask for someone to hold his hand, and almost all the time scratching his nose that has O2 on it and the NG line to his stomach keeping it pumped. We're trying to get him to ask us to scratch it as a consolidation prize, but you know how someone else doing it never gets the right spot :P.

Other than that he's in and out, for anywhere between 15 minutes and 2 hours at a time. Hopefully tomorrow we'll get the lines out of his nose and then we can just worry about pain management. I know he's already getting restless, asking to get up and move around:

"I want to be River again." kek, that one broke my heart.

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Saighdiuir de na Capall
Landrix
Saighdiuir de na Capall
Replied On: 04/03/2015 at 03:17 AM PDT

Highlight of yesterday: "He's no longer PICU material." He's breathing and peeing on his own just fine so we got moved out of Intensive Care and onto the Pediatric floor, much to the delight of several of his fans.

NG tube is still in and he's approved for popsicle and ice chips, but hasn't wanted any yet. They tell us that as soon as he starts passing gas, he can have the tube taken out; I've never wanted that stinker to fart more than ever ;)

Best part about moving out is that now his sister can visit him (6mo) which is better than any medicine they're giving him at the moment. He's being encouraged to situp and move around a bit, which he bites his lip and gets up with assistance like the warrior he is but you can tell how much it's hurting him. Expecting the bandage to come off today and we'll get a look at how the incision looks, been trying to prepare myself for that.

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Curadh de na Fhiaigh
xrist04
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Replied On: 04/03/2015 at 03:49 PM PDT
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Delighted to hear of the progress made. May God continue to bless you during this time!

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Kamia
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Replied On: 04/04/2015 at 11:07 AM PDT
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My thoughts and prayers are with you through this very trying time!

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Saighdiuir de na Capall
Landrix
Saighdiuir de na Capall
Replied On: 04/07/2015 at 09:20 AM PDT

We were discharged yesterday around 12:30 with a follow-up in a week. So far he's doing just fine and is catching up on all his play-time at home.

He's hobbling around a bit, and is slow to pick things up off the ground, but he is doing it (previously he would stand above it and say "I can't...") so PROGRESS, and progress is good.

Our next chapter in treatment is Stem Cell transplant which is a three week stay minimum in the hospital; needless to say I have overcome my uneasiness of them, now they're more like Hotel stays. This round is gonna be our roughest yet, info about what actually happens HERE. We're doing the Autologous transplantation (AUTO) version where they re-introduce his own.

We're hoping for smooth sailing until the 20th when we get admitted to go in, another stream of updates once that happens.

Thank you again for all the support you've given.



» Edited on: 2015-04-07 09:21:48

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Raighan
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Replied On: 04/08/2015 at 03:27 AM PDT
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I am so sorry you are having to go through this, he sounds like a strong little fella though and he has you by his side. I wish you all the best for the next stage of treatment, I will keep you and your family in my thoughts. Hang in there you are doing an amazing job :)

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Briseadh
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Replied On: 04/08/2015 at 10:59 AM PDT
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I'll be praying the stem cell thing works!  I had a friend who had that done to combat a cancer she got.  Not only did it cure her cancer, but it got rid of her rheumatoid arthritis she had since she was a teen.  I know they try to isolate you for awhile when the stem cell transplant is done so you don't acciedentally get introduced to any viruses and stuff.  You may have some visits where you might have to suit up at first, but then again I'm not sure how things have really progressed since I know my friend had it done like 11 or 12 years go.

Don't mess with Mama Bear, I might hug you too tight. =D
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Saighdiuir de na Capall
Landrix
Saighdiuir de na Capall
Replied On: 04/21/2015 at 10:21 PM PDT

How I talk about Stem Cell Transplant (SCT) has evolved as my understanding of the goals and methodology has increased. I would explain to friends and family members the pieces I was told and send links to websites as a quick FYI, but they don't go into depth of what the treatment is actually doing. Yes it may define terms used and outline the steps, but it doesn't paint the full picture; if anything I feel it seems to paint too bright of a picture. Even as a "cancer dad", up until last week, I heard "bone marrow transplant" and in my head it didn't seem too risky; I compared it to the heart or kidney transplants that I see on TV with the biggest complication being the patient's rejection of the new organ. In addition, up until last week, the treatments were logical; a round of chemo to reduce tumor size, side effects of nausea and neutropenia so no parties; imaging to see how much it had reduced, more chemo, more shrinkage, then surgery to remove what we can...relatively simple. None of the reasons I found online applied to his diagnosis and I was perplexed.

After last week's education and in-depth discussions with both of our oncologists (our primary and then the one that we will be under during our hospital stay), I now have a deeper understanding of what the target of the treatment is and why it's being done.

I understand that when it comes to cancer, you gotta stay positive; but for me, the posiitvity acted as a veil, offering hope, but obscuring the reality.

Yesterday we began a high-dose round of chemotherapy that will bring this little boy to death's door in an attempt to rid him of parts of the tumor that's too risky for surgery as well as catch any other cancerous cells they haven't detected. Even if he had full tumor removal, this treatment would still be his next step. They are going to give him such a high dose of chemo drugs that the stem cell transplant (more accurately described as 'rescue') is required to bring him back and set him on a road of recovery that will include therapy that will last years and side effects that will remain with him the rest of his life.

I take our reality and swallow it whole
The wall at our backs we rally within
Together we fight, our cause to survive
Through challenge, through strife, our future begin

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Foghladha
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Replied On: 04/21/2015 at 11:06 PM PDT
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Hang in the Landrix, we're rooting for you guys and sending you our angel support.

"It's not the loot and accolades you walk away with, it's the memories and friendships that you cherish forever." - Foghladha
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Nokomo
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Replied On: 04/22/2015 at 04:35 AM PDT
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My thoughts and prayers go out to you and your family.  I am inspired by your son's strength of spirit in the face of his diagnosis.

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Saighdiuir de na Capall
Landrix
Saighdiuir de na Capall
Replied On: 05/04/2015 at 09:19 PM PDT

My mother-in-law is a blessing. She's been coming down on the weekends and totally taking over day and night shifts at the hospital. It gives both wifey and myself much needed breaks from our daily routine and dare I say get a little normalcy in.

This weekend was different. On her watch the worse part (not considering any complications) set on in the matter of 48 hours. We went from being concerned when to give him Tylenol to address pain that resulted after running around the BMT ward, to how to inform the nurse to come press his PCA pump for more morphine.The chemo has a delayed effect, and while he finished his last round last Sunday, it's taken 8 days for his cell counts to hit rock bottom and for some of the side-effects to set in, and when it rains it pours. This morning around 0130 my mother-in-law was woken to him vomiting, and soon he spiked a 103 fever. Of course this is all expected, but it doesn't matter how many times you were told, you aren't prepared emotionally for seeing what it does to him. The mucositis is so bad that he's signing us yes/no and what he wants, which isn't much; he just opens and closes his hand, wanting it to be held, often no fully conscious.

He has a rough 5 days ahead of him while we wait for his stem cells to engraf. Here's hoping for the best.

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Isha
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Replied On: 05/05/2015 at 04:35 AM PDT
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I can't imagine what you're all going through.  It must be horrendous watching your child go through something like this and not be able to "fix" it.  You & your family are in my ongoing thoughts and prayers for your son's full recovery and your strength to get through it.  Take care of yourselves.

 

Isha

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Saighdiuir de na Capall
Landrix
Saighdiuir de na Capall
Replied On: 07/14/2015 at 02:58 PM PDT

So, alot has transpired since my last update, sorry for dragging my feet here =/

Stem cell transplant had it's rough patches but over-all there were no futher complications. As soon as we were discharged, the next clinic visit with his normal oncologist he stopped all "at-home" meds and let River relax for a week before starting the next treatment. We still had to maintain zofram for nausea, and still do to this day. He's gotten really good at taking that pill, and even obsesses about what number and letter is on the pill before we break it in half.

We soon started the next chapter in his treatment which is radiation. The target is to "coat" the area where the tumor was prior to re-section with small doses of radiation in order to disrupt any cancer cell's life cycle while it's in it's M phase (ie, prevent the tumor from growing, and any new ones forming). Initially we were told that River was going to get 15 rounds of radiation treatment, for about 5 minutes of each day; it'll take him longer to be put to sleep and wake back up than it will actually giving him treatment. On day 10 we found out that instead our plan was to undergo 24 rounds, nothing like having the goal post moved on ya =/

Radiation comes with it a host of percentiles of bad things happening down the road in River's life, chances of developing different forms of cancer in any of the organs that are being irradiated at 20 year and 30 year marks, on top of the usual side effects: hair loss, nausea, diarrhea. Because he's having to be put under for the treatment (no wiggling) he has to be NPO for at least 8 hours prior; and you can imagine the problem this poses when you have appointments at noon (enter hangry threenager). To compound the scheduling challenge, the center where the Radiologist works doesn't have any pediatric anesthesiologist on-staff, so they out-source it to a local group of doctors. Because of this we have about a 16 hour notice of when his next appointment is and are extremely subjective to last minute re-schedules and delays.

Up until this weekend the hardest part has been the radiation rash and hectic eating schedules. Saturday (7/11) there was a blood drive in River's name and he had a blast playing with the fire-truck that showed up. He got to run around and be a kid for the morning, but the heat and exhaustion soon took his toll and around noon mom and him packed up and headed home. Later that day he started to run a fever but we brought it down with fluids and a few hours later he was out playing in the pool with his sister and me.

Sunday morning he woke with a 103.5 fever; this is bad, we're supposed to call the Dr when he reaches 100.5. We rushed to the hospital's ER and after he was accessed we stripped him down as they were wanting a urine sample and the best way to get him to pee on command is to have "naked boy" time :P He was sitting on the bed playing with his iPad and then I noticed his fingernail beds had turned blue, toes showed the same and I immediately thought I had let the poor kid freeze trying to get him to pee in a cup. I got him to lay down and cover him with a blanket, but then he started shaking. Blanket after blanket, it didn't matter his breathing picked up to a rate just under panting and ever bone in his body was rattling.

I pause for a moment to remind what River's "treatments" are doing to his immune system. Chemotherapy, and specifically high dose chemo with stem cell rescue, wreck his immune system and leave it in shambles. Over time it will get better but it will NEVER be what it once was. Normal infections that any other child would shrug off after a few hours of mild fever pose a lethal risk to River. A lot of deaths from childhood cancer come not from the cancer itself, but your average infection that their bodies can't fight off because of how damaged their immune system. We've been relatively lucky with his battle so far, all the bad stuff has been planned and expected; this was the first time we were being surprised with a complication and regardless of preparation, it scared the hell out of me.

Back to the story, we would find out that the sudden drop in body temp & BP accompanied with the body shaking was a septic shock brought on by an infection he had contracted. The most common source of an infection with these kiddos is a line infection because of how often they access it to administer medicine; but we weren't 100% certain that was the case here. After some additional blood tests and cultures grown, it turns out there are two different families of bacteria in his blood, one that's from his gut (how it got into his blood is still being investigated, we're fearing an abscess due to radiation treatments to his abdomen); and the other, accompanied with a CT scan last night shows spots in his lungs that could be pneumonia. BUT, the good part is that they haven't identified anything they can't kill with copious amounts of anti-bacteria treatments and isolation.

We're still in the hospital for at least 72 hours and 14 days of isolation. This is going to push back our next treatment which is anti-body/immunotherapy (More about that hurdle when we get there).

Take care.

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Cyrexae
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Replied On: 07/14/2015 at 05:24 PM PDT
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Lifting you all up in my prayers!

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Ruwund
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Replied On: 07/15/2015 at 09:51 AM PDT
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my prayers for continued progress and full recovery.

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JaeOnasi
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Replied On: 07/16/2015 at 10:18 AM PDT
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THanks for the update, and we'll keep praying for his improvement and healing! Getting through the stem cell transplant was a big hurdle and it sounds like he made it pretty well for that part. Hang in there! Hugs!

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Saighdiuir de na Faolchu
Cliff
Saighdiuir de na Faolchu
Replied On: 07/28/2015 at 03:32 AM PDT

Any new updates? How is the little kiddo doing? I'm following this as I have 3 kids of my own and can't imagine how difficult this could be. Are you guys doing ok?

 

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Saighdiuir de na Capall
Landrix
Saighdiuir de na Capall
Replied On: 09/15/2015 at 01:54 PM PDT

Thank you for your patience, it's been a fast paced two months :)

Picking up where I last left off...

So, nothing came of the spots in his lungs, they just stopped showing up, that's fine by me. We were discharged and sent home with 4 days of oral anti-biotics. As soon as those were up, 72 hours later, he started going through the numbers again; fever, sluggish, rush to the ER, septic shock. While this time it was less frightening, you haven't seen anything until you see that kids jugular skipping along at 172 beats per minute =/

Turns out the anti-biotics didn't clear him of the infection, apparently they call it a line infection not because that's where it came from, but rather because the biofilm that makes up the central line harbors bacteria and shelters it from treatment. This time an infectious disease Dr. got involved and it was determined that his port needed to come out. He had surgery to remove that and had a PICC line placed under his right bicep, fast forward two weeks and he's off anti-biotics and doing just fine.

SO, now that we're done with that detour, back to fighting cancer...

On 8/27 we traveled up to Fort Worth to Cook Children’s Hospital to get a second opinion on River’s next step in treatment from a Neuroblastoma (NB) specialist, Dr. Megan Granger. It resulted in additional scans requested so mom and River stayed up there for 3 days and returned last Friday night. The plan is to pass his scans around to a few top surgeons nationally and see if any can have a chance at removing some of his tumors.

A part possibly not shared before; about 40% of River’s original tumor still remains, packed tightly in his pelvic region. This being the case, River’s disease now is officially classified as “treatment resistant”; not good sounding, but not the end of the line just yet as overall, he’s still in relatively good health. This translates to him being healthy enough to try more treatments, all of which put his body through hell. Previously we have been following a proven Children’s Ongology Group (COG) protocol, but since there is still remaining tumor, we’re now out on the “frontier” of treatment options, with a goal in mind, but what will work is more loosely defined.

A little side-note about NB tumors, they aren’t necessarily homogeneous as one would think, a single mass can have two different “compositions” if you will, resulting in different characteristics; one of them being reaction to treatment which is what we have seen with River’s where the tumor shrunk 40% after the 2nd round of chemo, but only saw minimal reduction after 4 more rounds (different drugs mind you) and radiation.

A local surgeon’s opinion of tumor removal was that it was “inoperable”, meaning that the tumor couldn’t be removed without dire effects to the patient; in River’s case, losing his colon and/or bladder function. We’re hoping that the surgeons that specialize in NB tumor removals mentioned above will have a better outcome and possibly help us to remove possibly key parts of the tumor, not necessarily all of it.

While we await for additional surgical opinions, and due to the delays from the bacterial infections, the Dr is wanting to start a treatment in the mean-time to not only keep the tumor in check, but also to try to see if a different combination of chemo drugs will hopefully reduce the tumor’s size, in-turn increasing surgical outcomes.

2 weeks of waiting, not something easily done when you know there's still avid tumor :(

We finally heard from Dr. Granger and she is wanting us to take part in a clinical study (ANBL 1221) of a combination of chemo drugs aimed at killing the tumor.

The study that the Dr. wanted River to take part in is actually closed, but the drugs that are involved in it are commercially available so we’re able to proceed with following the methods of the study, just not officially in it. Here’s a link for those interested: https://clinicaltrials.gov/ct2/show/NCT01767194?term=ANBL+1221&rank=1. This being the case, last week ended up being just a doctor’s visit to sign some consent forms and some additional tests (bi-lateral hip aspiration) done prior to our treatment that started last night. Joscelyn and River drove up Sunday afternoon and are now in-patient at Cook Children’s and through 2/5 chemo treatments, antibody should be starting in a few hours. This is a big one, you can read more here (https://en.wikipedia.org/wiki/Antibody) but to sum it up it is VERY pain intensive and is rumored to be one of the toughest treatments to endure. We’re staying at least until Saturday, barring any complications. After 2-3 “cycles” of the treatment, we’re going to have some new imaging done and see if there’s been any reaction to the tumor, and make a decision there on whether to undergo more cycles (up to 5) or try something else.

This treatment begins our first that has us separated as a family; Sparrow and I stayed behind and will be driving up on Wednesday night to start the shift work and give Joscelyn some downtime. Until then it’s a pseudo single-parent mode for both of us as it’s just us and one of the kids; Joscelyn, by far getting the tougher end of the deal as she’s trapped with a soon-to-be-enraged toddler. We have been lucky thus-far to receive all of our treatment here in San Antonio and we are truly thankful to have gotten as far as we have without any major travel involved. Hopefully progress is made and we can keep our treatments in Texas ;)



» Edited on: 2015-09-15 13:57:56

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Ban Seaimpin de na Griobhta
Isha
Ban Seaimpin de na Griobhta
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Replied On: 09/16/2015 at 02:30 PM PDT
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I continue to pray for River's recovery and your family's strength to get him through this.  Try to take care of yourselves.  

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Laoch de na Aracos Liath
LeslieoftheStars
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Replied On: 09/17/2015 at 01:14 PM PDT
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Hi Landrix,

I have been following River's progress since you first let us know. I can't even find the right words to express how sorry I am that he has had to go through all this. I continue to pray for his recovery. God bless you and your family.

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Ard Bantiarna de na Fhiaigh Bán
JaeOnasi
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Replied On: 09/18/2015 at 10:53 AM PDT
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Thanks for the update. We're praying for you all! Hugs!

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