It has been amazing being home again! We still have a long road ahead of us and really need to find a new place to live. We out grew this place the moment we moved and have just continued to do so over the last 4 years here. No that Robbie and I are home, I have no room for the things that he needs that we have in Aurora. I have no room for his special chair (which is why I've gone back to a stroller, though it is not as supportive), I have no room for his gait trainer/walker, I have nowhere to put his excersaucer that allows him to stand and play and swivel (that works his core muscles). We are also still without an income as I await more information about the CNA program and how to move forward with that. I also cant just go out and get any other job as it likely wouldn't pay high enough that I could afford to hire a qualified person to care for Robbie (the idea alone gives me extreme anxiety and isn't a realistic option right now)
Any sharing of this is greatly appreciated too, I hate to continue to ask for help, but I don't have many other options at the moment.
I have to ask if you can all share this for us today. We have hit some major financial set backs and could really use some help. Robs car broke down today. He needs to be able to get back and forth to work and NEEDS to be able to get down to Aurora the one day a week he is able so he can see Robbie. We do not.presently have the means to fix Robs car no matter how major or minor the fix may turn out to be. We appreciate any and all help, even just a share would mean the world. Thank you <3
Prior to Robbie's journey, I (Ashley) was the only one in the home working. When Robbie was diagnosed April 10th, our income ceased entirely and we have no way of making up the loss of a full income for our household as I am with Robbie 24/7 and we are struggling. Hitting our goal on Robbie's GoFundMe alleviates a huge source of stress and concern for us as it enables us to pay bills, as well as catch up on things. It helps us provide groceries for two separate households (due to our family having to live 85 miles apart), gas for Robbie's numerous daily appointments that equates to about 30 miles a day. Our help resources are limited and we are struggling. Even if you are unable to help by donation, sharing Robbie's GoFundMe and his prayer page are still HUGE help. We thank you all for your prayers, support and continual words of encouragement
Chemo Round 3: Day 1
Our day begins with apple cinnamon oatmeal, a blueberry muffin, green tea, Frank Sinatra (Robbie's pick) and lots of snuggles! Nana will be joining us after church today as well. Good thoughts and prayers for our little warrior today please
Surgery for a permanent shunt has been scheduled for 745a. Lots of prayers and good thoughts please!
So. I've been told I saved Robbie's life today. This am he was very sleepy (normally up no later that 8a). He would acknowledge me when I tried to wake him, but would never fully wake, and by 1030a still hadn't woken, wouldn't drink and wouldn't fully open his eyes and had obvious change to not only his neuro status, but the right side of his face looked like it did post surgery (almost like a stroke victim). Took him to the ER, they immediately took us back, I ran through what was wrong (I thought it had to do with fluid shift). His heart rate was 58 and his temp was around 94 degrees upon intake. They took him back for a CT scan and almost immediately after Dr. Duddley showed up. He was part of our original neuro team and he said we needed to place an EVD immediately to relieve pressure as the fluid build up was even more than yesterdays MRI. His brain was literally being compacted to the right portion of his head and this much fluid could have easily caused hemorrhage. Dr. Duddley placed an emergency EVD and almost immediately over 50ml was drained. As soon as it was placed his heart rate went up and within minutes his face was back to his baseline normal again. We've been admitted to the PICU. I am unsure of how long we will be here. His oncologist said he will need a permanent shunt. Robbie is awake and alert now, drinking, talking and hungry. Prayers that we will be out of here in just a few days and that all goes well. His chemo and radiation schedule will have to be pushed back a week.
Today. We danced. He was so fill of life and light and playfulness today :) I wish I could share it with all of you. He didn't like when I tried to record him though as it caused Pandora to shut off and he just wanted music today. Days like this make me wish we had a second camera around outside my phone. He was very verbal, telling me hungry, bless you, welcome, excuse you, hold it, open it and scared me all on his own! Right arm is moving more as well!
For the first time in over a week, Robbie ate a large amount of food on his own! We removed the feeding tube and have seen a wonderful improvement in speech and took some big strides today in liquids intake! He drank 10 ounces throughout the course of today on his own! That may not sound like much to many, but for Robbie, that's huge! Prior to this he would peak at 3 ounces in a 24 hour period and the rest he needed had to be given through his feeding tube. Little steps feel like big victories here :) Next round of chemo set for May 21st!
"Promise me you'll always remember: you are braver than you believe, smarter than you think, and stronger than you seem"
Christopher Robin to Pooh
Stem cell harvest today! Hoping that all goes well and we can get out of here after! Everything is progressing well, but it can take up to 8 hours and we are only 4 hours in. At least we will have a pediatric wheel chair for him this time when we get released to Ronald McDonald house :) hoping we can try and take out his feeding tube tomorrow too!
It warms my heart immensely to be able to say that today was one of Robbie's best post surgery days thus far! Our day was full of chuckles, smiles, karate chops and HI YAs, kazoo playing and blueberry eating. He would roar and then eek! when roared at. Said cheese for the camera. He loved having his Great Grandma Bonnie sing to him and tried to sing along with her. He closed his eyes and swayed his head when sister played a song for him on the kazoo. He was the most verbal he's been in weeks! He told sister "turn off tv" "teeth, POTTY!" And was incredibly interactive with all today couldn't have asked for a more heartwarming mothers day!
Thank you all for your support! Robbie started chemo last night. It was uneventful, but he has it again tonight and tomorrow as well. Tomorrow is the big 6 hour chunk of chemo. We are hoping he still does well. Sorry for the lack of updates until now, there has been a lot going on.
As a parent, you always hope for the best. Even at my worst, I couldn't have imagined the news we got yesterday.
Atypical Teratiod Rhabdoid Tumor
That is sweet Robbie's diagnosis. It is incredibly rare and has a high mortality rate. We were told today at the next 6 months of our lives will be spent in hospital, Ronald McDonald House and Brent's Place (for immunosuppressed children). We have a long and difficult road ahead of us and there are no guarantees.
We have also set up a fund at Wells Fargo for Robbie.
Robert Henry Butler Medical Donation Fund
Donations can be made at any Wells Fargo bank.
The hope for today is that his EVD tube can be removed, leaving just the subdural drain in place and start the process of weaning him off of needing that. His sodium levels have been well regulated and they are hoping to turn off the drip that is helping regulate that since it is such a minute amount (the lowest the resident has ever seen used, they created this dose especially for Robbie) and hope that he is able to do so on his own. That has previously proven difficult, so, fingers crossed! He didn't sleep much in the last 24 hours, so tonight they will be giving him melatonin to help him sleep and go from hourly neuro checks to every 2 hours in hopes he will get some sleep instead of anticipating the hourly check. Still unable to sit up past 30 degrees and therefore still on the feeding tube. They will also be having someone from ophthalmology check on Robbie's eyes today, I don't feel he is able to clearly see and it is concerning since they said they were nowhere near any optic nerves and even the swelling shouldn't have impaired his vision outside of some initial double vision. Prayers that goes well please! They are hopeful that we will be able to get moved off of the PICU tomorrow. Keeping him here overnight as they need to constantly check his sodium and be sure that it is in fact regulated. Headed in a better direction today, prayers it continues that way!
Kind of having a rough day here today. Robbie is lethargic and pale. I know it may sound silly, but for the first time since we got here, he looks sick. And that's concerning. Lots of prayers and good thoughts today please!!
They are concerned. He hasn't come out entirely from the anesthesia. He is sleepier than they'd like and they think it has to with something going on in his brain. His urine output is higher than it should be and his body is dumping too much water. Sodium and electrolytes aren't where they should be. Trying to get into imaging asap to look at his brain.
Robbie is currently having the shunt and catheter put in. Once he comes out of this, he will recover in is room. Once he has had the chance to recover, he will be taken over to have another CT scan. This time on his abdomen. During his fits of pain last night he would say that both his tummy and his head hurt. With our recent issue with intussusception, we requested they check his belly too. An Xray determined the need for an ultrasound and that it turn showed fluid on the lower right quadrant of his abdomen. It could be nothing, but needs to be checked out regardless. They will do a contrast, and and CT and let us know what they find. Hopefully the update will be that it is nothing. Thank you all for your continued prayers and donations. Please share this anywhere and any way that you can.
Robbie had an exceptionally rough night last night and we have literally had zero sleep. He was in a lot of pain in waves throughout the night. They have decided he needs to have a shunt placed into his head with a.catheter inserted.into his brain and tumor to relieve some pressure. He will be intubated and knocked out for this. Anesthesia is not easy for Robbie. Procedure is scheduled for 10am today.
Thank you all for your generosity today. We will never be able to full express how grateful we are.
Today was a mixed bag. He had some very stressful lows, and some heartwarming highs.
Our highs today:
We got to see big sister today! She was given the okay to come see him and it did them both some good!
He had a wonderful hour and a half of normalcy where he had an appetite and wanted to interact and sing with the movie Frozen (his first time watching it, he only likes the part where she sings "do you want to build a snowman?") He loves snowmen and Santa :) They've also changed him from a crib to a regular bed so we have the ability to lay with him and snuggle!
The steroids they have him on to help with the swelling in his head make him irritable and generally very discontent.
We had a worrisome episode in which he appeared to be in pain, but was unable to communicate what was wrong and wasn't focusing on anyone in the room.
He is having trouble sleeping this evening and is very fidgety and restless and of course fussy.
We take each day as it comes and I constantly re read your words of encouragement and support.
Our sweet 2 year old boy was diagnosed with a brain tumor on 4/10/14. He was perfectly healthy until January 19, 2014 when he mysteriously broke his femur walking out of a room.
- January 25, 2014 he was back in the ER with a severe rash under his cast. It was treated with antibiotics
-February 20, 2014 his spica cast was removed.
-March 20, 2014 he started complaining of belly pain off and on for most of the morning. Took him into the pediatricians and she sent us to Children's Hospital ER (2 hours away), he was diagnosed with intussusception. It' rare and it's when a portion of the intenstine telescopes into itself. Very serious, can cause death in just 2-5 days (please don't ignore colicky belly pain in your small children). The corrected the issue within air enema and sent us home.
-March 24, 2014 after a rough fever filled, sleepless weekend our PCP sent us again to children's hospital with the fear that he had an infection from the intussusception. They did an X-ray and nasal swab and determined his high fevers as due to a respitory virus (though he had no cold symptoms and never developed a cold)
-April 9, 2014 after a few good days he suddenly started to not feel well, was sitting on my lap and told me his head hur, had an episode and almost passed out (he has been complaining of headaches off and on since early Feb, could never get anyone to address the issue)Took him to local ER and they diagnosed him with an ear infection.
-April 10, 2014 I confronted our pediatrician about all these mysterious ailments in such a short time frame, told her that I wanted answers and she agreed it was abnormal and was concerned about the headaches. He tested positive for strep throat while we were there. She consulted a neurologist and the requested we come down to childrens for a CT scan on his head and bloodwork. CT scan showed a tumor. He was admitted into the PICU at children's.
-April 11, 2014 they did an MRI on his brain and spine. The tumor is a little over 4cm and located in the front left part of his brain. It has not spread into his spine nor anywhere else in is brain, but the tumor is large and the neurologist doesn't feel this can be corrected by surgery alone. The have scheduled his surgery for Thursday, April 17th.
The outcome and follow up have yet to be seen, but we have been told our stay here will be lengthy. We have a 10 year old daughter who is unable to stay in the PICU with us and has needed to stay in a hotel with a relative in from out of state while we wait for an available room at the Ronald McDonald house. We need help to be able to stay here and care for our son with as little distraction as possible. It is not reasonable nor affordable to make to one way 2+ hour drive daily to see our son and neither of us is comfortable leaving him right now either. As hos comfortis hard to maintain right now. Even if you can just donate a small amount it makes a huge difference for us. Please think good thoughts for our son.
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