Today was the last day Cashy will receive full cranial and spinal radiation! He only has 11 direct proton boost to the tumor and he will be finished... Below I have attached a photo of Cashy's mask that he has to wear during radiation, they actually clamp that to table that he is positioned on so his head will not move.
Thursday, December 29, 2011
So this is really good news, it would be better if it was completely gone but shrunk over half the size, I'll take it! So we are happy and thanking god and thanking all you Cashy fans for sending all your love, positive energy/thoughts, prayers and vibes for Cashys complete recovery.
Our next hope is these next 11 treatments can really just shrivel up this tumor and be gone! It can happen!! Cashys proven to us before he's a fighter!
Love you all!! Believe!
Cashys hiding from the camera in this pic. He hates the paparazzi!
So they will do the MRI then transfer him to proton where they will do his 19th treatment. This MRI is a critical one because were hoping and praying that this tumor has shrunk and is responding to treatment. Please oh, please god!!! I'm so nervous, I hate scan days. I always am such s nervous wreck. Ahhh.
So were not sure if we will hear results today or not, I'm hoping so! So we will let you all know as soon as we hear.
Fuck you cancer! Cancer fears Cashy!
Wednesday, December 28, 2011
So we stayed at the Hampton inn on Saturday night (I picked the hotel, not knowing it wAs under renovation) and we arrived to a merry Christmas sign for cash and Colten on their hotel billboard! Colten thought that was pretty awesome! Our room was nicely decorated with a cute Xmas tree and stalkings, it was lovely. The boys finished decorating the tree. We went to dinner at outback steakhouse, and it was delicious! The boys got in the jacuzzi tub, Then we just kicked back for the night. Colten got a message from Santa (portable north pole, so funny---you can upload pictures and he Totally knows everything about him) and to his disappointment he made the naughty list, but he still had 24 hours to redeem himself, he was beside himself. Such better sleep then on these plastic mattresses at the Ronald!
Mike and Colten got up in the morning to take a swim, and since the hotel was under renovation the pool and hot tub were pretty dirty and not to mention there were two dead mice floating in the pool.
So we opted to switch hotels with a cleaner pool so Colten could swim, he was so excited to swim, that kid is like a fish.
We stayed at the Hilton garden inn for Christmas eve were we ordered room service for dinner. Colten got another message from Santa and after being good all day he made the nice list, he wAs so relieved. Colten set up the wii and played super Mario bros for awhile and they also went swimming at like ten pm. Cashy watched rio on his little DVD player. He likes the dog in the movie. He's always like, "that's funny", lol..he's so cute.
Sunday morning Santa clause had made it to the Hilton--colten got his iPod and Cashy got all the cars he could ever want. It was so fun seeing them open presents, Cashy loved it. Last year he wasn't feeling to great so this year I think he understood Santa and the whole present thing, so it was fun to see his bf brown eyes light up! We went to the Ronald McDonald house for Christmas dinner and it was delicious!!! We stuffed our faces and snuck back out to the hotel. So nice of those people to come and cook dinner for strangers on christmas, so kind.
Mike had a great Idea that next year we as the Cash Hyde foundation go and cook dinner on Christmas day for the parents and children and the Ronald McDonald house there in Missoula. it will be humbling.
So back to the Ronald McDonald house Monday night we geared up to start back at radiation. We went to a movie (which probably wasn't a great idea becUse it was so packed with people) we saw--we bought a zoo, so cute, a tear jerker though. This old cranky lady kept shhhsshhing Cashy, I shushed her back a couple times. Rude. Cashy wAs so funny cause he kept blabing and singing "water, water, water, water" and how could you tell you baby to shush when he was having such a good time?? Lol.
So yesterday Cashy went in Bright and early to get and iv placed, which the nurse couldnt get it on the first try so they opted to gas him to sleep then place a iv. Fine with me. Less torture for the poor guy. His veins are shot, he's been poked in every vein besides his head. Which a nurse warned me might come back with one in his head. He didn't.
His radiation treatment went well and he was transferred to internal radiology where they tried and tried and finially placed a picc line in his vein in his neck/shoulder area---it took them 3 hours!!! That's how shot his veins are from all the lines and ports he's had. Poor bugger.
So he wasn't feeling well from 5 hours of sedation, he threw up a few times and finally was able to keep some juice and his meds down around 6pm.
We Met with the radiation docs yesterday and they were kinda downers, even though I know they can't tell you yes his tumor is shrinking, at least they could be hopeful like we are. So this week sometime (still waiting on a actual day/time) they will do a MRI to see if tumor has shrunk. If it has shrunk they will modify beams so it's not damaging his optic nerves and they will do a full 30 treatments--she said from last scan she couldn't even see optic nerves that the tumor is so embedded in them. :(. She is amazed he can see. Believe me he sees great from what I can tell, I can barely pull anything over on him. Lol. If it hasn't shrunk then they will only do 28 treatments and reduce the risk of damage. So that was hard to hear but I have faith and hope that with the radiation and the oil, he CAN beat this and it WILL go away, that's all we can do is hope and pray that god will give Cashy another chance and let him grow up to be a amazing young man. And that's what we believe will happen. There is a reason for all of this right?? Somewhere deep down there is a reason why kids have to suffer and die from this horrible disease and we believe Cashy is here to change the way pediatric cancer can be treated. He is over halfway done with radiation and hasn't needed one dose of zofrAn, Ativan, benadryl, or phenegan for nausea or a single dose of pain medication either. He's my little super trooper and he is going to change the way nausea and pain Are treated during cancer treatment I just know it. If a three year old can go through full brain and spinal radiation without pain or nausea medication, how can that not set a precedence?? It's down right amazing, and I'm so proud of Cashy. I'm so proud of Mikey as well, for throwing it all out there and speaking and telling our story to the world, he's doing big things and soon someday everyone will be listening!
Cashys in radiation treatment number 18 right now, he was up feeling good this morning, his arms a tad sore from the picc line placement, but he was rocking out to music this am on the way to hospital. He also refused to change out of his cars jammies this am. Hes so funny about things. :)
Have a great day everybody!! Love you all and thank you all for your continued support and prayers, we read every comment you all post and it touches our hearts deeply, they give us hope and strength to keep going. Bless to all!
Tuesday, December 27, 2011
Monday, December 26, 2011
Friday, December 23, 2011
So he's in treatment right now, day 16! Yay over halfway done now. Seems like we've been here forever. He wAs acting a little nervous this morning but he was spoiled with three presents from the radiology techs. So sweet.
Still no vomiting! So excited about that! He is seriously the worst gagger/vomiter ever, and not even a gag or anything. That's huge. We all went to see the chipmunk- chipwrecked movie last night! Cashy absolutely loved it, he wAs dancing to the music and had a good time. He's so darn cute. He kept saying throughout the movie, "that's funny." lol he is the funny one.
It's really quite amusing to watch the looks of sorrow and saddness on peoples faces when you walk by with cash in your arms or when he's just cruising himself. We didn't get the looks when he had hair, now that he's bald, it's like "this kid has cancer"--no questions about it. It's to bad. Alls you can do is walk proud!
I also want to to thank everyone who' helped with the Santa smiles fundraiser, the maryjane fundraiser, and everyone who helped sell sentsy bears! Thank you all for being so kind and generous during this holiday season. Thank you everyone who helped plan and put t together for us to be able to get out of the Ronald McDonald house this weekend and stay in a hotel! Were all very excited for some real sleep and just spending time together. I know things can be tight during these times, but everyone has been more than generous and it touches our hearts deeply. So thank you all so very much. We really couldn't do this without all your love and support. :)
Cashys out of treatment and sleeping off his sedation in the recovery room. What a long week! This boy has more holes and poke attempts then a pin cushion, literally. It's amazing how strong he is, he is my little hero. I love him so much.
The boys are excited for Christmas, Colten reassured us that Santa can find us wherever we are at, so not to worry. Lol.
Merry Christmas to everyone!! We love you all. Keep up the prayers and positive thoughts for Cashy, were over halfway done!!!
Wednesday, December 21, 2011
So we were sent back up to our room after recovery and Cashy took a little nap and then was up a feeling good and being silly. I ran over to the Ronald McDonald house to wash his blankies and "ball" pants. To our surprise we had some beautiful flowers from my mom in the room and tons and tons of toys "Santa" brought. Holy cow, there are enough toys in our little room to last three christmas's. So cool, Colten was really excited! He got a cool vtech cAmera that he's been taking pictures with nonstop!
Cashy ate pretty well last night, the best He has in a week. So after hanging with the boys together in the room, daddy took Colten back to the Ronald and Cashy ended up falling asleep around 9pm.
Around 930 thy moved a baby into the area next to us and as I'm listening to the nurse review all their standard questions upon admission, the mom tells the nurse that she had been sick for the last few days and the baby has been as well with what her dr told her was the flu and a cold, and that she had been vomiting alot lately. Then the baby vomits. I run out to the nurse and mention that I just heard her say she and the baby had been sick and that I didn't want my baby who was just getting over a staph infection and has low immunity. Last thing I need is Cashy to get the flu. I go to the charge nurse and complain and i got flashed a whole lot of rudeness and she told me she couldn't talk to me about that pt because of hippa, ok---I want mg baby moved or her moved out. She said they had no where else to put her and that we would have to deal with it, and that she needed to talk to dr to figure out what to do. I told her I wanted to talk to a supervisor and she refused to let me and said she had to follow a chain of command. So I call mike in a tissy all upset and hd says he is comic over. I take cash out of the room hooked up to his iv still and go and sit in the parent coffee room, I am not having my baby be exposed to the flu virus. So Mike arrives and starts complaining o the charge nurse that we don't feel our son is safe and he wanted to talk to a director or a supervisor, right now. She refused to give mike the directors name or number, and he ended up getting it from the secretary. They send up a supervisor after an hour of sitting in the coffee room and we gave her our list of complaints from the entire week in hell. So an hour and a half later we are moved to another room. In the process Cashys iv in his wrist come out and we lose it. Now he needs another iv. Crap. So at midnight after just getting Cashy to sleep they make us go to the procedure room and try to place a new iv, and for a visual every one of his veins in both arms are poked the shit out of, bruises everywhere. The nurse misses. After holding Cashy down screaming for 15 minutes while she dug around with a needle. Nurses out there---if you try and put a iv in and you don't get it right off, fishing around for it isn't going to work. It's only torture. So I said no more they can do it in am. So at 1 oclock after Just going to sleep again they come in to the room and say they are going to try again with another nurse! Seriously. Same thing, screaming, holding down and pure torture. No iv. Fuck. So we go back to sleep again, I kid you not at 530 they came back in and put an iv in his foot. Least the guy got it though. My poor little baby. He is seriously the strongest little person ever. He puts up with so much. It breaks my heart.
So at 8 o'clock this am we go down for radiation treatment number 14!! Yay almost half way!! This time they planned on placing the picc line in his left arm. Once again after two hours of trying they were unable to get it in. :( fuck. I was so upset. at least they changed his dressing in his chest while he was still sedated. Thank god. There is a picture below of Cashys radiation mask that they put over his tiny little face. Ugh it's heartbreaking to see.
So back up to the oncology floor about 12. Doctors rounded at 1 and decided they would discharge him with the iv in his foot and leave it in for thursday and Fridays treatment and take it out after on Friday. Yay, I was so relieved!! Cashys exhausted, mike and I are exhausted, we needed out of there. So they switched his iv antibiotics to oral ones and loaded us up with Supplied for the iv and his dressing changes this weekend. We arrived back at the Ronald McDonald house around 6 this evening.
Cashy just passed put on daddy's chest after playing with all the new toys in the room. He is worn out and exhausted.
Colty and I are lounging in the tv room watching nick at night! Sorry for the super long update but a whole lot went on in the last two days.
If everyone could keep Cashy in your prayers while we continue through treatments. He needs to keep his strength so he can get through this and move on to the next step.
I'm pooped out! Goodnight all and merry Christmas. Thanks for everyones support and love! Bless you all!
Monday, December 19, 2011
Cashy woke up bright and early this am, at 6. He didn't want to go back to sleep so we played cars and watched the chipmunks. It's so funny and cute hearing him crack up at the movie, I love it!
Daddy came up and switched me out at 9:30 and radiation was scheduled for 10:45 but it was delayed until 1230. Poor guy was thirsty and hungry. The radiation oncologist resident came and talked to me before cashy went in to check him out and she talked About how they will switch to just the proton boosts to the tumor itself around the 29th, then we should be done after those 10 treatments. They are going to do a MRI next week to see how tumor has responded and so they can modify the radiation beam if it's shrunk to minimize damage to his optic nerves since the tumor is embedded into the nerves. Scary stuff.
He had his treatment and then they moved him to ultrasound while he was still sedated so the could do a ultrasound of his veins to find a proper vein for his picc line placement. So he finally got back up to his room around 4...a long day for the boy.
Daddy brought him a pizza to snack on and he ate a few bites, but he wasn't interested. we will give him some tube feedings tonight so at least he gets something. Thank god for the gtube.
He is so funny and particular about things, obsessive really. Like he loves these pj pants with basketball/baseballs/footballs on them, he cAlls them his ball pants, if he has a blow out in them, god forbid, he will NOT ketchup change them, it's a fight to get them off. It's really odd. Lol.
So tomorrow he goes in for radiation at 7:15 and will get his picc line placed at 8:30 after radiation while he's still sedated. Then hopefully I can convict docs to let him out and back to the Ronald McDonald on iv antibiotics that I can hook up (there are these antibiotic balls that go in over a set amount of time, then you just throw it awAy when it's done) and unhook to his iv and not have to be inpatient anymore. God please!!!! It's the only reason were there now.
So now daddy is with Cashy and colty and I just finished up 6 pages of homework that his teacher so graciously sent to keep him up to speed. I'm no teacher, believe me, but I've got him doing pretty good on his subtraction now though! :)
Once again, thank you all for taking the time to read our blog and thinking and praying for our family and most of all praying for a miracle for our little cancer warrior. I could not imagine life without my Cashy, the thought of it just rips my heart apart. We need a cure for all these innocent children. Merry Christmas everyone! Love you all!
Sunday, December 18, 2011
Then he was ready to play and we went to the play room for a bit and played cars and playdough, then he threw a fit because I messed up his playdough (god forbid) so we left and went on a walk down to see the Christmas trees on the main floor. He really like looking at the set up they had, he couldn't touch anything though so that pissed him off a bit. He's easily ticked off. Then he kept asking for daddy, so we went "looking" around for him (daddy went and took a nap) but we didn't find him, lol. So we went back to the play room. 2 1/2 hours later he was a little pooped and we made our way back to the room just in time to see grandma and grandpa Julie and Jim. He was a little worried i was leaving so he was acting grumpy. They left after 20-30 minutes and he crashed instantly.
Were still waiting on the nurse to come and change his dressing and I am pretty sure that he's late on getting his antibiotics as well. He should have them both done around 10 or so. I asked about it and they told me they would come and do it in 30 minutes, that was an hour ago and now he's asleep. I'm not letting her wake him up either. They either need more nursing staff here or need some time management skills. Ugh. Kinda frustrating that were still here because it's like were just on our own doing our care and if it wasn't for the antibiotics the nurses wouldn't be Doing anything for him. Mike changed his bedding and everything yesterday. He needs a picc line and i could do the antibiotics at the Ronald McDonald house, home health can set you up on antibiotics that are in a ball that slowly release over the designated time needed. Then I Just attach and detach when they're done. I asked the doctor about it this am and he didn't really seem to know what I was talking about. Well see, he's kind of hard to understand, he's middle eastern or something. So as long as his blood culture from last night comes back negative and tonights comes back negative as well, then they should be able to put a picc line in during radiation probably Tuesday, I hope.
On a better note, the Harley davidson crew is doing a huge toy drive for the kids and at some point today we get to go down and Cashy can pick out a toy of his choice, so that'll be some excitement.
Please pray that we can get out of here soon and that Cashy can sail through the rest of his treatments with no more complications so we can be on our way home back to Montana, hopefully for good. Thanks everyone!! Love you all, and Merry Christmas!
Anyone who thinks that modern medicine has a proper pain medication for cancer patients,needs to come visit the 14 year old girl who we are sharing a room with. She woke up balling in pain at 4:00am because she was in so much pain!
Cashy has a golf ball size hole in his chest and all of his bones that get radiated should be pretty soar however the Cannabis oil keeps him very comfortable! Thank GOD for Cannabis!!
Saturday, December 17, 2011
After surgery the doctor came out and told us the instant they cut open his port site all this puss came oozing out. Poor little man. He came back to recovery feeling good and he went back up to his room a little later.
The night was rough but he finally got to sleep after all the neighbors commotion around 1130 to be woken up for vital signs at midnight. Ugh.
We did some tube feedings last night and he threw up a little bit twice. He didn't have a fever all night or all day today. The only bummer now is he doesn't have a line besides the iv in his hand now and for us to be able to give him his antibiotics out of the hospital he needs to have a picc line or another port placed. Hopefully we can get a picc line placed and get out of here in the next couple of days.
They came and changed Cashys dressing this am while daddy was here, I had go take a nap, I was so tired! Ou can see from the previous post that there is quite a hole in his chest, it gets packed and changed daily...kinda glad I missed that!!
Cashy has done really good today, up playing with grandma Julie in the playroom and went for a stroll in the stroller as well. He kept saying "mommy, night night" so we came back to his room and he threw a fit, he did not want to come back to this room at all. I think he wanted to go back to the Ronald. I don't blame him.
So mike picked Cashy up after his little fit and we walked around the unit while daddy held him in his arms, after five minutes he was ready to go back to the room and lay down. He's so sweet. So now he's crashed out and snoozing hard. Hopefully it lasts, the minute he fell asleep the neighbor got visitors, looks like her brothers and sisters. So the lights are on bright, but their being pretty quiet.
ThAnks for everyones continued prayers and support. The reality of these cancer treatments are just brutal and unfair to all these children. Bless their hearts.
Friday, December 16, 2011
He had his first proton radiation treatment today, for treatment number 11. 19 more to go! Everything went well and he no longer needs to be intubated each time now, since he will be laying on his back from now on. His chin was really red when he got done from the mask rubbing. Hopefully they can fix that so it doesn't breakdown his skin. He was really delirious when he woke up today and kept asking for Daddy. Daddy needed a nap though from being up all night long.
So when we got back to the floor, the oncologist was up here and took a look at his port (which is way redder and sore today) and he ordered a surgery consult for possible removal of his port. Were still waiting for them to come up, so I will update when we hear.
Thursday, December 15, 2011
Cashy had a fever ranging from 101-103.4 last night and this am. They confirmed a positive blood culture this am. Gram positive. We wot know exactly what bacteria it is till later.
He's been really sleepy and his port a cath is really bugging him, he's also very weak. :( hurts my heart to see him like this. Effin cancer.
They held off on his first proton treatment today and will resume tomorrow, after having three docs say yes he needs treatment and two other saying no. So no it was, which is fine because he is a sick boy today.
His temp right now is 102.4, ugh. It really hasn't budged, I was hoping it would break soon as they now have him on vancomyecin, a heavy hitter.
So hopfully that will knock it out and they won't have to remove his port a cath.
It's so hard seeing all these Bald headed children so sick...it's heart breaking. It really is.
Cashys hair is starting to fall out again, we will have to get out the clippers, hair on your Binky isn't very nice. Lol.
I tried to give him a bolus of pediasure through his gtube,since he's not eating really at all the last two days. Well that didnt work and he threw up all over and soaked his port dressing. So we needed to change it and the nurse couldn't do it cause she was to busy.
So Mike and the tech helped me change Cashys dressing for his port. The poor guy, we had to hold him down and clean it off and it was really red and swollen and pussy looking where the needle goes in. So we reacessed it and hopefully it won't continue to bug him, it looked really sore. He is such a tough and brave little man. He's my little hero. Makes me just tear up thinking of what he has to go through, it's Just not fair and no baby should ever have to. He should be at home getting excited for Christmas with our tree set up nicely. But he has to worry about getting poked and pradded at, I truly wish I could take his place for him.
Keep him in your thoughts And prayers, and let's hope this infection is gone by morning and his fever stays away. Thanks everyone.
Wednesday, December 14, 2011
We got here around 5 and his temp was now 102.6 and they started him on some antibiotics and drew labs and did blood cultures. His labs cAme back better than yesterday's and his white count is now 2.5 so that's better than 1. His platelets are down to 78 but it's still a safe range.
We've never had to share a room on the oncology floor before so this will be a new experience, hopefully we don't (have to stay in here to long.
So were hoping that he can still resume treatment tomorrow despite being inpatient, I'd hate to deley treatment.
Well thanks everyone for the continued prayers and positive thoughts.
We got to the hospital expecting to start the proton radiation today and be done with the conventional radiation but they didn't have everything ready and will start tomorrow. So twenty more treatments with protons.
I told the doctor about his fever and she went to check on his labs that were drawn yesterday. His white count is 1. That is so low, like chemo isolation low. So now I'm a nervous wreck, no more crowded places for Cashy. They said if his fever comes back to take him to ER and they will probably have to admit him for iv antibiotics. Poor bubby.
They took Cashy back about 10 minutes ago for his last conventional radiation treatment, hopefully the proton wont be as hard on his counts.
So everyone keep Cashys counts in your prayers and pray for no bacterial infections. He definitely doesn't need to deal with an infection. Ugh.
Thanks for everyones support and prayers during all of this, we can't thank everyone enough.
Tuesday, December 13, 2011
Monday, December 12, 2011
<p>This is Day 8 of Radiation. We were able to find Cashy a quality medicine last week finally and he hasn't thrown up in over a week! Normally we would go back to the room and Cashy would throw up and nap most of the day! Today we are out to breakfast like he didn't even get sedated and have his brain radiated......