Wednesday, October 31, 2012

Happy Halloween!!

Isolation Halloween :( We did get to look out the window at the kids! The nurses jumped & danced in front of our window to make him smile. Big smile!! I think it's harder on mom than it is on him. Next year will be that much better!! They trick or treated in his honor & brought a big bag of candy by...the diet will have to start tomorrow. Today I will eat my feelings :) He enjoyed seeing all of the costumes, he really laughed that a hotdog waved at him. Big funny stuff in his world!! :)

Tuesday, October 30, 2012

He is getting stronger each day!! Today coloring is the big milestone :) I have never been so happy to see a smiley messey face! De Ann (my friend & domestic coach)stopped by for a visit! Thank you for the fun treats! His #'s are up so message me if anyone is up for a visit :) We still have to keep the visits short but the rumor is that we may be out of isolation tomorrow!! Little victories are GREAT too! Whaa hoo!
The doctors told me today that he is looking really good and on an upward trend. They said if all goes well Friday he will get his chemo & go home!!! Whaa hooo! He has been snacking more this morning, drinking from his sippy cup and is even laughing at mom being goofy! Yayyy! I love good news :)

Feeling better!

Photo: He is getting stronger each day!! Today coloring is the big milestone :)  I have never been so happy to see a smiley messey face! De Ann (my friend & domestic coach)stopped by for a visit! Thank you for the fun treats! His #'s are up so message me if anyone is up for a visit :) We still have to keep the visits short but the rumor is that we may be out of isolation tomorrow!! Little victories are GREAT too! Whaa hoo!

Saturday, October 27, 2012

Dad came for a visit!

Dad came for a visit today & Cameron was very happy to see him! He even spoke for the first time in almost 3 weeks! It was great to see more bits of Cameron's funny personality coming back. The doctors still say next week we get to go home
hopefully. We just have to get him to the point when he can take meds orally, his pain controlled and the fevers to stop. He had another low one today. Now that his liver numbers are coming down he is in a much safer range. So, the normal range for his liver numbers was 24 to 49 and his got as high as 9000! That virus attacked his liver but it will be ok & recover back to normal. That is almost as high as it goes before it can't go any higher, is what the doctors told me. Virus's are brutal & everywhere. We are in great hands here that they were able to figure it out quickly & turn it around. He was one sick boy. Now that he is better it can sink in for me how sick he really was and overcame it. He is a fighter! With all of your love, prayers & support he is going to kick this for sure! Thank you everyone!! Even the doctors agree we are on the road to recovery! :)

Friday, October 26, 2012

Getting better! Whew!

 Someone is feeling better!!  Happy Mommy!!
 Mommy is funny sometimes
 Nurse Jen fighting tube spaghetti...she won :)
Cameron wanted to decorate his IV pole

Yayyyy! He smiled, stood up & hugged me today, a real I mean it hug!!!! I was beyond happy! Wow! What a great feeling! I think it's safe to say the medicine is working :) It shouldn't be long now until he is back to our goofy Cameron. He is getting some more blood today, but other than that the blood-work keep coming back that he is improving! He is still doing a lot of sleeping and he had a fever again last night, but improvement is always good :) Thank you for all of the love & prayers!! It's working!

Thursday, October 25, 2012

Quiet day :)

He is having a quiet day today sleeping mostly. He got up for a while & had a bath and a fresh port access. They have to un-plug his IV from his port on his chest sanitize it & re-plug him in with a new one once a week to keep his IV line fresh. It's not so much fun but his nurse Sheryl made it quick & easy. He had had IV nutrition all night & all day. That is a good feeling. All of the blood

is looking better each day. The prediction is less than a week left here if it all stays on track. He was supposed to have his Day 29 of 57 day phase chemo today, but it will be delayed until next week. So he can get stronger. Then we will be back on track & officially half way through this last tough round of chemo. Next week's chemo is Vinchristine, Methotrexate in his spinal tap, Cytoxin & Cyterabine, he has had all of those before. In the past, they are ones that cause the big nausea. We have now figured out the magic medicine combo to fight it :) So wait and get him stronger for the last blast of chemo, then maintenance!! Here we come Leukemia, we are going to get you!!! :)

Wednesday, October 24, 2012

Just to make him happy

Ok, so there comes a time when you become desperate to make your child happy. I will do anything to make him at least a little, a while back when the meds got strong and they said each round would make him lose his hair, his got really thin. We shaved it to keep it from tickling him & he & dad did it together. So, each times we have taken it back down thinking this is the round that takes the rest of it, he & dad do it and he always says "mommy do it too". I hand it off to dad and dad tells him "only daddy's & brothers take their hair off". He stops asking until the next time. Then he asks again. So, here we are at the hospital and it was falling out in clumps, so I shaved his hair. He was frowning at me afterward, I asked him if he was hurting or felt ucky, he shook his head no & kept frowning. I said "are you grumpy" & he nodded yes, I said "why" & he pointed to his head. I said "are you mad I took your hair off" he nodded yes. I explained to him that I had to, so it wouldn't itch & tickle him. He then pointed to my hair. I said "you want me to take mine off"? He nodded yes, I said "would it make you happy"? He nodded yes. For how much he has been through, and someone who hasn't spoken, walked or smiled in 2 weeks, he said a lot. I made him happy. As a parent when you see your child so sick & unhappy you will do anything to make him happy. Afterward, I have asked him several times are you happy now & each time he nods yes. That's all I need. It's just hair, it will grow back, mine grows pretty fast. I called & asked dad ahead of time & he gave me the green light, said he supports it. I will post a pic tomorrow, my vanity & I are still adjusting to the change. The good news is the nurse gave me a cute surgery head wrap so it's not so noticeable when I work again. I will blend in, by then it will have grown out a ton more. We are going to be here a while anyway, one less thing to worry about :)

There are times you will do anything to make them happy

Tuesday, October 23, 2012

Yay Boost!

He is drinking some boost-plus & has eaten 5 cheerios! He had a fever yesterday of 102 but it was just a bump, it stayed lower the rest of the day. We are really trying to avoid the NG tube for feeding, if it is whats best for him they will do it. They said he will just really start bouncing back when the numbers in his blood work jump. So far, they are still rising. If all goes well we may be here only another week or so they said. He still isn't talking since his throat is still sore, just nods his head yes or no. Once he gets some calories he may start healing faster they said too. So far, so good!

Sunday, October 21, 2012

Nothing to report!

I am happy to report...there is nothing to report.  Nothing new, we are just waiting for numbers to start going up on his blood tests.  His liver numbers are slowly improving.  His fevers are staying low and less frequent.  His heart is now regular. He is still having pain from the mucositis (throat sores all the way down) from the chemo. I talked to another mom in the laundry room & she said they got the same thing when they had Doxorubicin. The pain med pump is really nice to help control it.  If he is having pain you push a button & it sends the pain med quickly through his IV in his port.  You can push the pain button every ten minutes but they don't recommend that so he doesn't get too loopy. He still is unable to eat or drink (he said he's not hungry/thirsty)and hopefully we can start back up on the IV nutrition on Monday. Once his numbers start going up his throat will heal pretty quickly.  His cough is improving so that is nicer on his painful throat. It will be 2 weeks tomorrow that Cammy & I have been here at Doernbechers.  Auntie T is bringing the twins up for a visit tomorrow, they have a event "Chelsea's closet" the kids get costumes and do a parade around the clinic. Cam & I will watch through the window(Still in isolation) & then the twins can come in with us.  VERY excited!! They said we are not going home any time soon so here we are.  Good thing I don't have claustrophobia, I'm getting a ton of reading done  :)

Friday, October 19, 2012

Watch & wait

The plan today is to watch & wait for more results to come in. The ones we have are sowing nothing. The liver results are improving, so that is in the right direction. He is having some fevers, low ones, but we can't give tylenol(to protect the liver) and we can't give ibuprofen since his liver deals with clotting and the irritation may cause random bleeding. The platelets are low too and the ibuprofen
 affects those too. So basically unless the fever goes up really high he has to tough it out until liver is better and/or platelets are better. I told him his only job today is to sleep. They are also increasing his pain meds (fentanyl)too for his throat. He looks more pale today but hopefully on the mend. We had a super nice surprise, dad came up last night and gets to stay for a while today! It was nice for dad to cuddle Cammy, I think they both needed it! The twins are having a sleep over with some friends from preschool Benny & his brothers. Thank you Katie Carleski!!! :)

Thursday, October 18, 2012

fevers again

105 fever! They are going to give him Iv TG(antibodies), Aclovir(anti-viral), Albumin to plump his veins & he got platelets this morning too.  They are stopping the TPN nutrition & giving fluids. He just had an Echo heart ultrasound. The infectious disease lady came by too.  We are stopping all liver drugs & changing the morphine to fentanyl.  They will be drawing more blood for more tests too. That's the low down...

That liver!!

Just when we thought we were on the upswing...that liver. So, he has taken another turn. This is what they said...His blood counts went up dramatically overnight (their words). It is almost about as high as they can go before they stop being able to climb any higher. They don't know just yet what is causing this high on the list of "maybe's" is a virus or drug interaction. They don't know.
The gastroenterologist is coming by today to talk. They are stopping anything going through the liver. The function tests said there is blood flowing through the liver & some of the test are ok, but others are very concerning. They will be stopping his TPN nutrition, giving him platelets and immunoglobulins and IV antibodies too. He is not turning yellow, yet. His fever is being kept in check with ibuprofen(goes through the kidneys not the liver), it was 103.6 overnight before another dose. He may be getting a feeding tube(NG tube) that goes in his nose down to his tummy since he needs some kind of nutrition. The same one the twins had when they were just born. Ugh. More tests today, I will keep you updated. The good news is that we finished steroids. Prayers :)

Tuesday, October 16, 2012

Cameron's room looks great he loves it!! "Rock'n Rooms" made his room ROCK!!! It looks amazing!! What a great event that helps kids have super fun decorations for their rooms while stuck in the hospital!  It helps the kids directly with what they love the best!! Thank you Valerie Morton & helpers!


We had a super nice visit from Jen & Heather. They got to see his new fun room! He had a great day yesterday, but tough night.  He is having a ton of throat pain.  We thought it was sore throat from the virus, but now they think it is chemo mouth sores, in his throat (Mucositis).  The morphine is only taking the edge off.  When he coughs, it hurts & he has to cough a ton to get the gook out of his lungs.  Something in this mix is making him sweat tons, so he is barely going tinkle. Dry diapers overnight, so that was an issue.  They did an ultrasound on his bladder to make sure there isn't a blockage in there.  All clear :) now he is just getting more fluids. We just keep putting out fires :) What will today bring ??? It's all an adventure :) Tomorrow is Bingo day again!!

Sunday, October 14, 2012

He is improving!!

Yayyy!~ He is able to regulate his body temperature on his own now!!! Whew! No fever & no warmer machine!!! That is a victory for sure!!  Thank you for all of your prayers, love & support!!!  :)

Holding steady!!

Steady is good! He still has the slow irregular heartbeat but he is holding steady. Now they think it may be the steroids causing it. He is going to have a follow up ECG heart test today just for completeness. He got a throat numbing medicine today. He is still on IV nutrition since his throat hurts so much. Iv morphine is working too. The respiratory therapist comes in every 6hrs to thump on
his back to help break up the gookies in his chest so he can cough them out. It hurts to cough so that's when we hit the pump too. They are backing off of the antibiotics since this is day 9 and would have gotten to the cooties. He is still on his C-Diff meds & anti fungal meds too. He is in cuddle mode today. He had some awake time too. He rally understands a lot of what is going on. He knows his heart is sick, his throat is sick & his blood is sick. When it's all better we can go home. We are not sure what time but we are going back to the 10s Cancer kids today! Back to our room yayyy! He will have a heart monitor there too just not as intense. I am no longer afraid of being in the PICU it's not an end here its just more support. That was a really good lesson for me, so if we have to come back again it won't have such a negative stigma to it. Not so much panic factor to it. It's just more focused assistance rather than the end. Tons of kids get graduated from here back to their rooms, that makes me very happy to see :)

Saturday, October 13, 2012

We are staying in the PICU for awhile longer

Ok rumor squished, we will be here still until they officially say we can go back.  They are still holding our room upstairs so that is promising.  He is getting some blood this morning, so thank you to some stranger some where. The blood will perk him up too. They want to watch his low heart rate & irregular rate.  Now they think it may be a combination of medicines maybe causing it.  That is the path they are pursuing now.  No final results on the scans yet.  He is more alert today and his heart rate is consistently up a little.  They said they look for trends & it is trending higher, so that is good. The cool part is we have the biggest room they have so that is a bonus :)

Friday, October 12, 2012

Hear comes the really big guns!

But wait there is we are in intensive care (PICU) and they just did a CT scan and the preliminary looks good. There will be an MRI tonight some time. They will sedate him for it. Trying to stay positive is tricky with all of the scary options being mentioned. We will be here tonight for sure, then if they don't find anything we will be back to the kids cancer area in the morning. No
one is allowed to use cell phones here so thank God for facebook :) This is the "I mean business" praying time. When they clear all of the pictures of his brain tomorrow I will celebrate with a happy post on here for sure. This just feels unreal. It is nice to hear his beeping heart rate. Comforting for sure! There is quite a variety of kids here. Babies & young kids. Again the nurses are super sweet and the doctor is a no B.S. straight shooter, which I absolutely love :)

Not good news

Ok so here is the low down, Cameron took a turn last night. At 4 am the heart monitors went off saying low heart rate. When we checked him his hands and feet were warm but his body & neck were very cold even though he was covered up well with blankets. His temp was so low it wouldn't register on the thermometer. When we did get it to show it was 93. That was after warm blankets. They gave hi
m more fluid, different antibiotic & anti fungal antibiotic. They put him on a bear hug warmer that blows warm air in a special blanket. He is up to 98 with the warmer. They tested him for the flu too. Nothing is coming back with info. His low heart rate is the concern with the low temp can be a sign of infection too. Just waiting for the input from the cardiologist & if this is a fungal infection the meds should work in about a day and a half. So just waiting for some kind of info. He is sleeping comfortably now.Keep the prayers coming please :)

Thursday, October 11, 2012

More gear!

The infectious disease doctor assessed Cameron today and thinks it my be a virus that is being so mean on top of the C-Diff. They did a deep nasal swab and should be back in 3-ish days. They tested the poo again too. He started the constant Morphine drip & seems to be working nicely, since his system is used to taking it for his knee pain. It took over an hour for the nurses to put the machine
s together and program them with all of the tubes. It was a big job but he is going to bounce back soon from the fevers. Today was Day 7 of high fevers and a virus runs about 10-ish days. He got his chemo today and it will take 7-10 days for that to effect his ANC#. If we are going to have a 0 ANC# then I am happy to be here in isolation, its like our own little bubble here. The twins get to go on an adventure this weekend with Roberta. We were able to skype with the twins this morning & Cameron(and I) really liked that. It looks like we will be here for the "Rock the Rooms" event on Monday. They have such fun stuff for the kids. I also heard that the dad from the movie Twilight was here not too long ago visiting the cancer kids. Very cool! One more reason to love that series!! :)

Sore throats are no fun

He had another fever of 104 last night. The sores in his throat are kind of a big deal since they may have to put him on 24hr IV drip of Morphine. If he is on the drip he can't go home. The sores will last until his ANC# goes back up which may be a couple of weeks. That means we stay here for the duration until his ANC# goes back up. I am not sure if that is in isolation or not. He did get up
and color for a little while yesterday! He will be getting the IV nutrition tonight & chemo too. They will not put a NG feeding tube in because it will irritate his throat more. Whew. He has been sleeping all day so at least he is comfortable & oblivious to all of this. They will do a test today to see if this is the RSV virus too. Thank you so much for all of the love & prayers they are working. He is able to get a few bites of food in. In all of this, they are able to keep him comfortable and that is such a relief :)

Wednesday, October 10, 2012

Still having fevers

He is still Mr. Hot stuff, so the plan is to stop the IV tylenol around 1pm & see exactly how high the fever goes after he has been on these antibiotics. This will determine the next course of action. If he continues to have such an upset tummy he will get nutrition through the IV tomorrow. I was told by the nutritionist this C-Diff really makes your tummy rumble & churn so this not eating is right on track with what he has. The issue is the high fevers, if it goes high again today with the break in tylenol they may start doing some scans to see if they are missing anything. Bingo (for toys) starts at 1pm wish us luck! :)

Tuesday, October 9, 2012

Still fevers!

Today is our 6 month anniversary of his diagnosis. WoW! We have all learned a lot in 6 months!! This is day 5 of fevers too. He is so tough. We are still waiting for the medicines to work. He is still sleeping a ton & eating little. He did get a few bites in and drank some too. Whew! He had a fever of 103.8 this afternoon and the doctors were on it. They came to check on him several times until it went down to 101.4. If the fever stops before Thursday he will be able to get his next round of chemo on that day, if not he will be delayed. The good news is we will be here for Bingo tomorrow :)

He has C-Diff

We have an answer to why he has the fevers.  He tested positive for C-Diff.This is what they told me... It is a bacteria that is pretty much everywhere. Since his ANC# is lower he is more susceptible to it. It causes diarrhea, nausea & fevers. It is really common in hospitals but it is out in the community too.  It is a harder to kill bacteria because it releases spores that don't die with alcohol or hand sanitizer.  You have to physically was the spores off of your hands.  I thought hand sanitizer did the job but I guess not :) now we know.  Since it is contagious to (normal immune) people still no visitors & isolation for us.  They will use antibiotics for 2 weeks (Flagyl).  He can go home once his fever is down, diarrhea has stopped, appetite back & nausea gone.

Monday, October 8, 2012

wait & watch

He slept all day!! He just woke up and now is ready to eat. It may be a late night. He had a chest x-ray and it shows there is something cooking in there. His fever is back but lower now 101.4 he is definitely in the right place. They are really on top of things. He may have c-diff so he is in isolation until that is resolved. Other than that, he is doing better at least fever-wise.

We are at Doernbechers

We just got admitted here at Doernbechers. They are going to watch him and see how it goes.  It looks like we will be in isolation, so no playroom or hallway time.  He doesn't feel like playing anyway poor guy.  He is sleeping now. When the nurses & doctors come into the room they wear big gowns, masks & eye protection.  They look like they are going in surgery! I guess it's to keep his cooties from the other kidos. Just a precaution but it still looks funny :) They also said no visitors until this is under control  :(

Sunday, October 7, 2012

Back at the ER

Back at the ER for more 24hr antibiotics (Rosefin) in the IV. This virus is a mean one. When he woke up this morning the fever was 103.8. He was able to have some ibuprofen last night which was a big deal since leukemia kids are forbidden to have ibuprofen since it thins the blood. His platelets were high enough that they would risk it. Since he was able to do that, he got some relief from th
e fever overnight. When it wore off back up it went. Now his platelets are dropping so no more ibuprofen :( If he still has this tomorrow we go back up to Doernbechers for a full evaluation to see if he will be admitted up there. The nurses are super nice here and we are getting a system down here at the ER. I hate to keep coming back here, I wish they could give this medicine in an office visit but the doctors want the ER to do it. I guess they know what's best! We are in good hands! :)

Saturday, October 6, 2012

Thank yous!!

It sure was a big help to have Kayleen & Kelsey here last night while Cameron & I went to the hospital. Dad was working out of town so it was super nice to have the help. My mom came today for a while too! They all took the twins out for an adventure so Cameron & I can get some rest. Thank you to everyone family & friends who have offered their help during this whole adventure, it is appreciated more than you know!! :) It is super nice to have the "Fever Watch Gang" Thank you!!!

Getting Better!!!

We are back at the ER for the antibiotics. His fever is down to 103 before tylenol then down to 100.2 after so that is big improvement. I think we may be getting to the end of this bug. Yayyyy! Whew! Go Cammy Go! :)

Friday, October 5, 2012

Trip to the ER

Midnight trip to the emergency room with 102.7 fever.  Since his ANC# hasn't dropped completely the rumor is we get antibiotics and go back home.  Whew! We dodged that one :)

Thursday, October 4, 2012

Another chemo day

We went up for chemo today & he did well but still nautious on the drive up from the last chemo he had on Tuesday. He goes back again on Thursday next week. Once the nausea is under control he bounces back pretty quickly. Cameron just recently became sensitive to the saline flush when they flush his port. I will take any pointers on how to help him with the "ucky taste" of the saline flush. He even cries at the smell of the alcohol wipe they use to disinfect his tube. It's all a new thing. Just when you get things figured out there is something new :)

Wednesday, October 3, 2012

Doing good so far

Cameron is doing really well this morning. Yesterday was tough for him, but he bounced back by bedtime & had a great night. He is getting so good at doing his blood pressures, temp check and doctor exams. He sits still and tells the doctor where to put her stethoscope! Again he didn't even cry when the nurse "plugged in" his port for the IV tube. All of the nurses comment on how much he is gro

wing too. The chemo was supposed to slow it down, but he is growing right through it. The chemo was supposed to stop the rapidly dividing cells in the body and his slowing his growth was going to possibly be a side effect. He is really getting tall! It is amazing that on the 9th of October we will have been doing this for 6 months! It is crazy how much everything has changed. Thank you all for your prayers love & support!! We REALLY appreciate it! Thank you for being on this adventure with us :)

Monday, October 1, 2012

Doing good so far!

We go back to Doernbecher's tomorrow for another chemo.  We usually only go once a week but this week it's twice.  The chemo he gets is called Peg-asparaginase it is tricky in the sense that it can cause an allergic reaction.  Of course any med can, but this one is more common, we get to have a child's Epi-pen on hand & to take home in case he reacts.  I am sure he will do great, he has had once before but it is always a risk with it.  It just makes for a long day, it takes a while to get it from the pharmacy, then run it in over an hour, then wait another hour to see if he reacts. At least we get to go home after!!!  We go up again this Thursday for another chemo day with more of the same medicine that will lower his resistance.  So far, we are doing pretty good!!

He is doing good so far!

Cameron had a really nice weekend! We had a nice surprise at his chemo appointment, the doctors said we would have 7 to 10 days from  the day he got his chemo to see his ANC# (Resistance to infection) go down.  That was like getting the gift of time!!  We took advantage (cautiously) of our last few days of his resistance being up and enjoyed some fun outings. The steroids are slowly building up in his system so he is still our little Cameron for the most part (not the grumpy steroid kido).  We have some friends staying with us helping out & one is a registered nurse, so its super nice to have our own personal nurse to ask questions to.  We are very lucky to have such great friends!!  This week now should be fairly quiet & uneventful for Cameron, is what the doctors said, but it gives us time to refine our techniques of infection control. Here comes the war with germs! Thank you all, so much for cheering us on in this adventure!  :)