Friday, November 30, 2012

Good news!!

Good news!!! We just received a mini-blood test result that we obsess had no red flags!!!!  One more baby step forward!

Holding steady...

Holding news is good news :) The late night/wee hours is when it gets crazy, but hopefully tonight will be quiet. We are in a better position than we were last night. I will take it :) Please keep praying & sending the positive energy!!!

Holding steady

Holding steady, still on the big guns ventilating machine but they have not mentioned the ECMO lung bypass machine today so far. That is good. They are slowly lowering some of the settings on the one he is on so that it is not running at full blast anymore. I like that too.  All of the super sweet nurses/doctors & CNA's from upstairs at the cancer kids have popped by to check on us.  It looks like we will be here for Christmas. There is no word when he will be off of this intubation or on an easier ventilator. We are just waiting for him to keep getting better.  The twins are with Aunt kiss & dad got up here yesterday.  It is super nice to have another set of eyes & ears listening to the doctors.

Keep doing it :)

He is still here!!!! He is seriously amazing!!! That was a rough night. He is on an upswing pattern again. Yayyy! He got as close as you possibly can to needing the ECMO lung bypass machine. We want to avoid that because it is the last resort. At least we have a last resort, but we want him to move in the other direction. The prayers are working the positive energy or whatever you want to call it is working...whatever you are doing please keep doing it :) We are not out of the woods, but we can have more hope! :)

Thursday, November 29, 2012

We are running out of tricks

So, we are using our "bag of tricks" and running out of tricks. We have 2 left...we are using 1 of 2 tricks now. If this doesn't work he will go on an Ecmo machine, it is a lung bypass machine. It is kind of like what they use for a heart, but this one is for the lungs. Basically this machine will clear his blood & oxygenate it too. It has a ton of risks, but we are getting to the point that
this is it. The nurses say there are tons of kids that are on it & do fine. There are some that have bad side effects. This is the decision we have made, to go ahead with this if the current treatment doesn't work. Ugh, we will just take the odds he will come out fine. No guarantees, but it is hope. It is going to be a long night, keep those prayers coming :)

Good news!!

Good news!!!!!!!! The nurses exact words are " In this small moment of time, he is a very, very, very sick boy but at this time he is starting to turn the corner!!! He has hit the worst & starting to come back up!!!!!!!!!!!!!!!!!

This is the big fight

Cameron is still with us, he is fighting with everything he's got. There is a lot of ok blood work but a few not so much. This is the big fight, right now.

Baby steps!

So far, so good tonight.  The numbers are going in the right direction so far.  His heart rate is lower so that means he is relaxing nicely to all of this new gear.  He still has a lot more steps to take, but he is taking baby steps in the right direction so far. It is a good start.  It is really interesting to learn about all of these new machines that they use to monitor him.  Technology is really amazing how they can pick up on the slightest changes.  There are some seriously smart people speaking a medical language(the terminology),  I may as well be in a foreign country, for as much as I can pick out of the conversations they have. My nurses are great and have given me a tour of the monitors in his room & what the numbers, waves & noises mean. They have translated some of the intense conversations that the doctors have among themselves too. He is peacefully sleeping even just now in the time to type this, his numbers are a little better. Go Cammy go!! The prayers are working!

Wednesday, November 28, 2012

He is intubated

They did the procedure where they put him to sleep & check out his lungs again(bronchioscope). He appears to have more going on than the last time they did it. He is intubated and resting very comfortably. He will stay that way until we get more information. There isn't a lot of information yet other than he is sleeping & the monitors are steady. By 48 hours from now we will have a much better idea of how things are responding. Right now, there are a lot of variables. Once again, watch & wait. Thank you for the loves & prayers!! ♥

We are back in the PICU

Cameron is back in the PICU(Pediatric Intensive Care Unit). His rhino virus (common cold) is settling in his lungs. The x-ray showed he may have pneumonia. The doctors just wanted to watch him closer with more equipment. They may do a chest CAT scan & MRI possibly another bronchioscope procedure. They are not ready to do anything drastic yet like intubate him. Just watching & waiting more closely. Oh, & you can say some prayers for him too :) Thank you!!

Monday, November 26, 2012

He has a cold with the low ANC :(

It was a quiet day. Nothing new, fevers off & on which is normal when his counts are down so far. His nasal swab came back positive for Rhino virus again (common cold). Looks like we will be here a while. Thank you Grandma Merrill for the yummy dinner & coffee! ♥

Sunday, November 25, 2012

Here in the bubble

It just occurred to me that tomorrow will be 7 weeks that we have been here at Doernbechers (minus 48hrs). Wow. What a wild ride :) He is in good spirits this morning, his ANC is still zero & his white cells dropped again too. He had some fevers overnight. They think he has a new cold just waiting for the test result. Our adventure to the 7th floor may have been the window to get a new cold.
In his defense, his ANC# dropped 1000 points overnight that night. He had an immune system when he was there it just dropped super fast. That is the fastest I have seen it drop too. I think this is the lowest his ANC# has ever been. He will be getting more IV antibodies today. They said it should help give him a boost. We are here in the bubble :)

Saturday, November 24, 2012

low ANC#

Today his ANC#is 0 so I am SUPER happy to be here. He had some fevers overnight & they gave him some blood too. He may get another dose of antibodies too to help him too. They think he may be having a reaction to the Vinchristine chemo that he had. It may be the factor causing him to lose his voice. They said it is a know side effect to it in small children. All of this is familiar to them with other kids so that is reassuring. The fact that he was doing so well when the twins were here is also reassuring too, that he is bouncing back from things, it's just cold & flu season & it's everywhere.

Friday, November 23, 2012

Here we go again....

We were soooo close to going home....boom. His ANC# went to 100 which means his resistance to infection is super low. They thought he might skip the low ANC# but, no. When the ANC# is below 500 he can't go out in public, grocery store or assembly's. He got a 103.4 fever last night. They said it will be another week and half or more until we can think about going home :( I am very thankful this all happened here and not at home. The day before he was doing so great I was VERY ready to take him home. Now, I am very happy to be here where he is getting such great care. It is amazing what 24hrs can bring :)

Thursday, November 22, 2012

Happy Thanksgiving!!

Happy Thanksgiving!!! We had a nice visit this morning with Laura and our new friend Kent. A great way to start our day :)  I am thankful for my husband, Keylin, Cressey & Cameron. Our wonderful family and friends old & new! The wonderful doctors & nurses too. Cameron had a fever this morning so maybe Saturday we can go home!! That will be wonderful!! We are very thankful for Cameron making it through his hard treatment. There are so many things & people to be thankful for including all of the love & support, the list goes on and on! Thank you soooooo much! They have 3 turkey dinners here at Doernbechers & OHSU today so bring on the stretchy pants!! :) Cameron is already napping, just thinking about all of that turkey must have put him to sleep already. Have a great day!!

Wednesday, November 21, 2012

We did it!!

We had a great day today! We had a fun visit from Laura this morning with fun treats too. Thank you!! Cameron loves the treats & posters! We had a great visit from "Team Cole" He is one tough fighter too! Thank you for the goodies! The spinal tap chemo is finished, the kids & dad had their super fun visit, he had his graduation cake! The end of a BIG day! He is doing pretty well, still fighting hi

s irritated throat but his voice is coming back a little more each day. He is so tough! Thank
you everyone for cheering us on to help get us to this point. All of your kind words, love, prayers, fun treats & support have made this crazy adventure much easier for all of us! I wish I could hug & thank each and every one of you. Watch out, I just may do it if I see you ♥ no one is immune to my gratitude :) Thank you all SO MUCH!!!! It really has made a big difference! Thank you!!!! ♥

Tuesday, November 20, 2012

Such a fun day!

We had a super fun day today! The twins & dad came for a visit! Amy came to play too! It was a wild day, I'm tired :) It is the best kind of tired! Tomorrow is Cameron's spinal tap & spine chemo, then Vinchristine and then he has finished the hard chemo treatment phases!! It's a big day! I feel like running around the halls saying! "He did it!!!! He did it!!! He made it through the hard stuff!" I am so relieved to be starting maintenance. One Doernbecher visit a month, 5 days a month of steroids & 2 or 3 pills a day! "Whew" doesn't even begin to cover it :)

Sunday, November 18, 2012

Nice & quiet

Today was a nice quiet day with fun visitors, Laura & Melinda (Auntie Mo-minda). Thank you! Cameron's having some issues with nausea from the last chemo, but each day it gets a little less. His heart rate is up but it could be from any number of things, but nothing of any major concern. They are slowly weaning him from the steroids & he seems to be doing well with his breathing. It looks like
 Fun in the playroom with Auntie Mo-minda & friends
 Super sweet notes & pictures from the Parkrose  students!
 Love that Mickey!
 Big hugs with Laura~~
 Parkrose sparrow club are selling these, Cameron wanted them all  :)

we will be here for Thanksgiving. They do a big catered one on the 11th floor for the whole hospital & will bring a plate to us. The fun news is tomorrow is the Chelsea Hicks foundation is doing "Chelsea's Closet" it's when the kids get a costume & do a parade around the clinic & patient rooms. This time we get to join the parade instead of watch from a window from isolation. It will be fun to see what he picks out for a costume! :) Wednesday is our BIG DAY!! Last chemo before maintenance!! Whaaa hoo! That will be our "what we are thankful for" this Thanksgiving for sure!!

Friday, November 16, 2012

Another great day!

 Love my bear!!
 Helping mom do laundry
 Cameron & his buddy Daniel
 Dr. Merrill Checking out Nurse Kristen's boom boom
The blankets block the lights from the monitors and make the metal bars feel/look more cozy

 Cameron had another good day. The steroids are keeping everything in check.  Grandma Merrill came by with treats! Thank you! That was our big event for the day.  He did take about 6 steps in a row at least 5 times. Our new friend Tiffany let us borrow the bunny ball and he had fun kicking it in the hallway.  He is getting more motivated to walk.  The rumor is tomorrow if his breathing stays stable we may get to go to the physical therapy indoor play ground.  I have heard it is really fun there. We are hoping for another quiet night too :)

He had a nice day!

He had a nice day today. He is still having the breathing issues & received some more steroids. We are just waiting for the test results to start rolling in :) no news yet.

Wednesday, November 14, 2012

We are out of the surgery!!

He is out & doing really well!! He was on the tube a short time, but is off now. They gave him more steroids so we are skipping the PICU & more intubation!!!  Whaaa hooo! See, the prayers totally helped!  Once again our little champ surprised everyone.  They said the swelling was all above his vocal cords so that is a win too!  The Dr took a ton of samples & cultures so the next few days may have some answers when the results get back!! Yayyyyy!

Tuesday, November 13, 2012

Tomorrow is a big day!!

Getting a little nervous about tomorrow. We are not sure what time the procedure is since they are working us into the schedule. We could get in fast or we could wait all day. He has to be no food/drink staring at 6am. There is a big variable how long he will stay intubated & in the PICU. It depends on how irritated his throat gets from the procedure. It may be a day or 2 or even a week. They have no idea until it is all over! This would be a good chance for some Big prayers. Thank you~~♥~~

Monday, November 12, 2012

Here we go...

So, it looks like Wednesday they will intubate him & get a good look in his throat.  He should be in the PICU  for a few/several days afterward to settle his throat down & heal.  They will be able to get a complete picture of what is going on in there and perform any tests to get him on the mend.  From Cameron's point of view it will just be a really long nap :) He is finally eating like crazy from the steroids but he is having some nausea from his chemo that is irritating his already sore throat.  This will be a good thing, he will get IV nutrition & his body will get some serious rest so it can kick whatever is going on in there. Hopefully this will be the last bump in the road :)

We are back upstairs!

Yayyy! We are out of the PICU & back with the cancer kids! His breathing is still labored, but steady. His last dose of steroids is at midnight so tomorrow morning will give us a ton of information. We will know if he is over the hump or needs more people involved. Tonight should be a nice quiet night :)

Sunday, November 11, 2012

We are back in the PICU

We are back in the PICU (pediatric intensive care unit). At around 1am his rattle came back even though he is on the steroids. Since it broke through the steroids, they felt more comfortable watching him in the PICU. Right now they are not too worried, more of a watch & wait. If things do progress they are armed & ready!!! They are the experts in this stuff and he is in GREAT hands. They said it may be a new mucositis irritating his airway from the chemo. There are no tests to do, it's just wait for him to heal. He still has 2 more doses of chemo so they will let us know if they will finish it. Just a waiting game. They said they deal with this sort of thing all of the time :)

Friday, November 9, 2012


We just dodged a night in the ICU, his breathing got really labored due to the croup virus. There were 5 doctors in the room that agreed if the steroids didn't start working in an hour we were off to the ICU. The steroids started working and he sounds a million times better. That was a close one, that was 3 of 5 doses we are allowed hopefully he will beat this before we use up the 5. Now I can unpack & settle back in :) It is going to be a goodnight now :)

New word for today "Stryder"

He is still wheezing, I learned a new word, "Stryder". It means difficulty pulling in air. This is due to his inflammation in his throat & vocal cords. The medicine that works best on stryder is steroids but since he is having chemo he c
an't have steroids with it. The steroids can do wonky things to his body when he is already in the thick of this kind of chemo. So, the breathing treatments don't work on this kind of stryder either. So the Ear, nose & throat team are coming by today to check him out. Another part to this is, since there is the inflammation in his throat, it won't close off all of the way when he drinks thin liquids like water. In this case a small amount of liquid can go into his lungs. Monday he is scheduled for a swallowing study if this does not resolve by then. They will make him drink different thickness of fluids in front of an x-ray to make sure they don't go into his lungs. The good news is that today is the first day of 4 days on Cyterabine~~The very last nausea chemo!!!! Once these next 4 days are over no more uckies from chemo ever again!!! We have a few more rounds after this one, but they are easier! Yayyy! One less thing to worry about :)

Wednesday, November 7, 2012

Back on familiar turf

We are back with the cancer kids, back in our same room & back in isolation.  The good thing is we are back in the bubble & his ANC is dropping.  Happy to be in the bubble, but miss the family already.  They think he has the croup virus in combo with his previous mucositis from the chemo.  His breathing is noisy & labored so he gets an special breathing treatment the is inflammatory with epi in it. It makes his heart rate increase too.  His fever went up to 104 at the local hospital & the combo of it all directed them to send us back to our 2nd home here.  Since they made us ride the special pediatric "Panda Team" ambulance I feel naked without all of our gear :) Just the bare essentials, but I did manage to bring most of his blankies & favorite stuffed animals! Thank you Laurie for running the stuff up to the hospital :)

Tuesday, November 6, 2012

Fever again

We are back at the Emergency room here in town for a fever 103.2 just to watch him....looks like we are admitted here for the night since his ANC is up...they don't admit at Doernbechers unless his ANC is low enough.  The good news is we get to stay local     :)

Just another bump in the road....the fever is down, the heart rate is down, breathing fine.  Thank you for the prayers!! It worked!  This is our room for the night :)

Monday, November 5, 2012

Home is a great place to be!

We had a great day! So nice to be home! He is eating & drinking small amounts but he slowly becoming more active. He is taking his medicine pretty well. It is still a battle with the nausea, but it is not as bad as it has been in the past. His brother & sister were just loving him all day. It is hard for them to understand why "Cammy" (that's what they call him) can't talk or run & play. I told
them he will soon, he just has to get better from his special medicine that fixes his sick blood & he had an ucky cold too. They seemed to understand that and moved on to the next topic. I was sorting the mail & thank you to all of the sweet people who sent care packages while we were at the hospital!! Wow!! I will get an official pic & thank yous out soon, tonight I am pooped :)

Sunday, November 4, 2012

Good to be home!!

Yayyy! I am SO happy to be home!!! It was such a great feeling to pull up to the house and see Cameron's smile when he recognized that we are home. That gave me goose bumps. Very happy to be home!!! Thank you for all of the love & prayers through this crazy adventure! I still think the prayers worked, at each rough patch it was the best outcome for each hurdle, if that makes sense. Thank you for all of the support too! We are really lucky to have you all supporting us in this wild, crazy adventure. I feel like you have all been part of the ups & downs in this. Sometimes it feels like a pretty wild ride :) Thanks for riding it with us ♥

We are going home!!!!

Yayyyyyy! Wha hooooo! We are going home today!!!!! 1 day short of a month here!! I told them I wouldn't feel cheated if we had to go home 1day before the month anniversary! I would still find a way to be happy :) When the doctors left the room I wanted to run a victory lap!! Yayyyyy!

Saturday, November 3, 2012

The squeaky wheel gets the oil right???

The really good part about still being here at the hospital  is that if things get tricky, it's like having your own personal emergency room,  just lean out your door & say "Heyyy...I have a question" :) The poor nurses & doctors with my millions of questions...they may just send us home so I will stop pestering them :)

Just waiting around :)

Yesterday they did the scope with a little tiny straw like camera through his nose. We loaded him up with Adivan ahead of time and he did really well. He was relaxed and mellow. It went really quickly and he didn't seem too majorly bothered by it, more inconvenienced. Advian is wonderful! They found some inflammation on his vocal cords and gunk just hanging out just pestering him when he breathes. In the middle of the night his breathing got really raspy so they gave him an anti-inflammatory breathing treatment. It ended up helping him, but now his heart rate is staying high (180's). They are slowly weaning him off of the pain medicine too. We tried increasing the pain med to see if it lowered the heart rate, but didn't lower it. We are back to waiting & watching. Maybe Monday or Tuesday if all stays quiet! He had fun playing with some play-doh today!

Friday, November 2, 2012

Another bump in the road

We have the opportunity to stay a few more days...He was still having pain in his throat last night so they weren't able to lower the pain medicine enough to have it managed at home. This morning he woke up with a new wheeze(sounds like a pigeon cooing) and raspy voice. They still gave him the chemo but no sedation/spinal chemo since they were worried about his breathing during the procedure.
They are going to evaluate him with the ear/nose/throat team & use a scope to see what they find. The bummer part is that they can't sedate him for that, I asked for a oral medicine to make him more relaxed or forget completely. The magic mix of anti-nausea medicine is working :) We took a ride in the push car around the hallway, he had a GREAT time & even smiled at the doctor today. He is better, just another bump in the road :)

Thursday, November 1, 2012

Back on track!

Pet therapy! Huck the  cat!

Plasma cars are everywhere here

Fish tanks on 7th floor is a great time

It was SO nice to be out of the room today!! Cameron actually walked 10 steps today!! That is a big win! Thank you Auntie Jan for bringing dinner & movies. Yum! The doctors plan is that he is  to get back on track for treatment, day 29 of 57 days. Tomorrow morning at 10:30am he will get his spinal Methotrexate sedation. When he wakes up he gets Cyclophosphamide & Cyterabine ARAC in his port IV. Then an oral pill daily Thioguanine. This round is the super nausea round, we have had this mix before and we know what to expect, and how to fix it.   Since he has lost weight they want to watch him overnight to see how he does with the nausea. We may go home Saturday morning :) This chemo is also the ANC resistance dropper too.  They said 60% of kids  are admitted in 7 to 10 days after with a fever again.  Last time we were able to skip the fever, but that was summer & this is cootie season now.  At least we will get a break to go home until the fever hits again.  I may need my "Fever Watch" team for juggling twins on standby this coming week & weekend.  Thank you it is such a HUGE help!  :) Love you guys!  :)

We are out of isolation!!!

We are out of isolation!!! Yayyy! We were able to go outside to the play yard for the first time in 3 weeks! We went to the 7th floor in a wagon ride to go see the fish tanks. He loved it! He even went on a short ride on a plasma car. He still can't speak yet, just a raspy whisper. The rumor is it looks like Saturday we may get to go home sometime. Yayyy!