Cameron's Legacy Toy Drive!!! Thank you "block 15" restaurant!

The first family pictures without him. Heartbreaking but must be done. We were lucky to have so much wonderful help!!

We did it...the First Christmas pictures without him, his first Christmas in heaven. Thank you so much Kimberly Webster & Family, Nicole King & family for helping make this tough time easier. The King Family and our family are on the same path. It was sure nice to be surrounded with love during this tough, awkward time. Love you guys!!! ♥

We did it...the First Christmas pictures without him, his first Christmas in heaven. Thank you so much Kimberly Webster & Family, Nicole King & family for helping make this tough time easier. The King Family and our family are on the same path. It was sure nice to be surrounded with love during this tough, awkward time. Love you guys!!!

Exactly a year ago today.

Here is Cameron exactly a year ago today. My great friend "Auntie Mo-Minda" (Melinda)came for a visit and gave him a Mickey Mouse. He loved it. That smile says it all. The 2 month count down started yesterday...ugh. I was able to have lunch today with Rachel, little Collin's mom. Collin is one of Cameron's little friends from Doernbechers that is up in heaven with him too. It was nice to catch up and get some tips on how she & her family are handling this too. Dad, Cressey is working on some toy projects for the Pediatric ICU & other sick kiddos for Christmas, more to come on that Very exciting! I just checked with the PICU the other day and they are in need of "new" comfy sweatpants/t-shirt/ sweatshirts for the families fresh from the ambulance. Sometimes, when they get off of the ambulance they are covered in "something" and have nothing clean to change into until family can get there, to bring them their own clothes. That is a big way to help families during their toughest times. They need size 6 to adult. Just an idea if someone is looking for a way to help out this Christmas holiday season. Donating online to "Sparrow Clubs USA"(sparrowclubs.org) for kids in medical crisis listing under "Cameron Merrill's Legacy program" to help out with his Fight Big Bags is an option too. Also, "Candlelighters for kids with Cancer" (4kidswithcancer.org) also has a "Cameron Merrill Legacy Program" to do a version of the Fight Big Bags too. Both of these great charities have a tax-id number so the donations are tax deductible!! Thank you so much for all of your love, prayers & support. It is a tough road but I/we seriously couldn't have gotten this far without all of your love & positive juju. Thank you just doesn't seem to cover it. Big hugs to you!

Missing him

Little Cameron before he had Leukemia 

I am missing him so much...I found this CD of pictures when I was doing some cleaning and had to show you how seriously cute he is. I miss him so much, it just doesn't seem real he is gone sometimes. I miss that smile and those hugs more than words can say. At least when I look at these pictures that it reminds me that he knew he was so loved & we did the best we could to make sure he had a good childhood. He has the exact personality you see in these pictures. Pure love.

Oops! I forgot to post this in September!

The 2nd trip of "Cameron's Fight Big Bags" to PICU (18 photos)

The September trip to Doernbecher's Children's Hospital PICU(Pediatric Intensive Care Unit) 2013

October

It's been hard to get back on here lately to give you an update. Things are pretty crazy around here now. The twins are in Kindergarten now and all of the juggling that goes with that. I would say that's the reason but really, the roller coaster is picking up speed again. The month of October was when all of the hard stuff started & the beginning of the end. It is a whole new kind of hard. There is so much weird stuff/feelings that goes along with all of this, it's amazing. I could go on & on. The good news is, the weird is normal, if that makes any sense. Right up until October, the easier days were getting to be more in a row than the hard ones. Last year, we spent the total holiday season there at Doernbecher's. This year, the truth is, I want to hide from it all, but the twins & Dad need me there and engaged. I may still do some hiding. My guess is February things will start to feel more settled. I finally found a mental "tool" that helped. The twins actually told it to me after one of the grief camps we went to this summer, the Benton Hospice(He wasn't on hospice, but they have a day to help kids with grief). They said, "We are all connected by a thin invisible silvery, sparkly thread. Everyone we love, everyone we care about, we are all connected together by a special thread. So, even in heaven Cammy is still connected to us by that thread." Out of the mouths of the kids, that helped my huge overwhelming panicky feeling of instinct of "Where is my baby, is he ok, where is he?" Feeling that connection to him, the special thread, that he is not just roaming somewhere in heaven. See, this the weird stuff I was talking about. Everyone with degrees & experience agrees I am normal, it just feels so weird to think this way. Another "tool" I learned was that there is so much deep, deep pain...it's kind of like if you stare directly at the sun too long, you would probably go blind. If you can make yourself (mentally) take peeks at the pain or "sips" it can be a little more bearable. If I think about how much of him and his lifetime I have lost out on, he's lost out on, I could go bonkers. So, "sipping" the pain & redirecting seems to help. It sounds so weird but it works. I am taking a break on doing a ton of his "Fight Big Bag Legacy" stuff right now, just until we get past January 17th. Then I will be back at it in full force. Some days are just so...ugh. The twins are doing really well, Cressey only had one hard "Cammy" day at school. Keylin is quiet sometimes and just watches the cute little boys and always points out the ones that looked like Cameron. Cressey has pretty much stopped asking if we could go to the baby store to get another baby boy & name it Cameron. Talk of Cameron around our house is never far from the surface. Whenever we do something as a "family" they always talk about how he is doing it(whatever the activity is) with us too, up in heaven bigger & better than we are here on Earth. Dad is doing good, nothing about this is easy, just keeping busy. I think we are all making some progress, it's just slow. Our friends & family did soooooo great in September with all of his Legacy events! Dad is getting a shaving team together for December, St. Baldricks...they fund research to cure childhood cancer. So many great things done in his honor, to make the world a little better, or "Big Better" as Cameron would say. We really helped a lot of people in the PICU(Pediatric Intensive Care Unit)during their toughest times, thanks to you. The "Fight Big Bags" are awesome. 128 pints of blood back into the system from the blood drives!! Each donation save 3 lives! Thank you for helping him to leave a mark on this world!!!! Wow, I wrote another book on here again, oops information overload Thank you for your love, prayers & support! Big giant hugs to you!!

9 months today

It just hit me...9 months today. I miss him so much, sometimes it feels like it was all just a bad dream & I will wake up and he will be here. Wishful thinking I guess. I just miss him sooooo much. Life with out him just is too quiet. This picture was taken last year when we went to tour the fired department here in Corvallis. He loved the fire trucks. The were not just oh-boy, but "Big-oh boy" Cammmy said. He would have just started pre-school. He would be a big kid now. We talk about him all the time. The twins talk about him nearly every day about what he would be doing if he was still on earth & what he must probably being doing in heaven, at that moment. The twins tell people "I have a baby brother, he is 3, he lives in heaven" just so matter of factly. They help us remember the cute little things he would say or do. It is all getting to be a way of life now. I still have a hard time seeing little boys that resemble what he looks like or who he might have grown into. I think that will stick with me. I just miss him. Please don't ever be afraid or feel awkward talking about him to us, we think about him all of the time. Thank you to everyone who have helped his legacy keep going. Thank you for your love prayers & support

He would be 3 yesterday

Ok, so I want to build on my friends idea about Cameron and involve you...people always ask what they can do to help and I never know what to tell them...ok, so I want to build on who Cameron is, who he was and who he didn't get the chance to be.  He would always say to the twins when they were crying "Are you happy now? Are you big better or little better? Are you happy now?" so in honor of his birthday of his life, who he was and who he would be, I want to ask you to do one good thing for someone else that you wouldn't normally do.  When you do, think of Cameron & do it for all the good things he never got a chance to do. My goal is for him to have a lifetime of good things to add to the world, a full lifetime. This is what you can do to help  <3 You can do it (little things or big things) and comment here to give others ideas or you can keep it to yourself. I just want him to have a lifetime in some way.  This may sound like a super weird request....but it makes perfect sense to me.  <3 Thank you to everyone who has already done this.  <3 Big hugs to all of you <3

The very first delivery of "Cameron's Fight Big Bags"

"Cameron's Fight Big Bags" made their first delivery to the pediatric intensive care unit(PICU)!!! Big Thank You to Sue George, Marium, Jacque Tomkinson and her "Thirty One Bags" family!! They all sent huge boxes of supplies! Jacque sent some really great "Thirty One bags"!! Thank you to everyone else who has given supplies too! The PICU staff doctors, nurses and helpers, they are all so sweet!!!! It was so nice to see all of the familiar faces who made a tough time easier. Lots of love & hugs! PICU nurse Michelle is amazing! The supply closet looked pretty bare and now it looks much better, ready to help some families. There is still more room, but hey, it's a great start!! We even found a good use for the left over gift bags from the twins birthday party. They can hold the "Comfort kits" until we get more Fight Big Bags. If you would like to collect and send gear for the PICU, the address to send it to is in the "About" section on this page. Please just items, no cash or checks since we are not an official charity and would have to claim it on our taxes as income. Sending items is the best route to help the families at the PICU. If you would like to donate cash or checks and would like a tax deduction, you can donate financially to Candlelighters for Children with cancer, since they are an official charity. A Candlelighters donation helps the pediatric cancer version of the "Cameron's Fight Big Bags" just name "Cameron Merrill" in the notes section. They are still moving forward on the pediatric cancer version of "Cameron's Fight Big Bags". They have been really great! The Qudoba fundraiser raised $1300 for the "Cameron's Fight Big Bag", bereavement & legacy programs. This is so great to see it all coming together! You have to start somewhere!!! You all...here on this page...have started something really good!! Thank you "Cameron Merrill's Big Fight Family" here!! Thank you for all of your love, prayers and support!!! Big hugs & loves to you!

Ok! Good news!!! We we have a box at the UPS store so packages don't get left outside the house in the rain or hot sun!!! They will also email me when the packages come in. We are already collecting some supplies for the "Cameron's Fight Big Bags" Thank you soooo much!!! This is really starting to come together!!! So, I found a bag that I like at the local t-shirt store, they offered to do the printing for free and the bags at a discounted price!!! .... So....for those who want to help (1) You can go on the "Candlelighters for kids with Cancer" and hit the donate button and put "Cameron's Fight Big Bags" in the notes section. This will help the families with kids with cancer, new diagnosis or bereavement program. This donation will put a bag only & gift cards for food gas, ect to families with a pediatric cancer diagnosis. This will really help them. We are doing this limited version due to storage issues on the cancer kids floor. (2) Another way to help is....you can send items that we need to fill bags for the PICU (Pediatric Intensive Care Unit) families, if the are in the PICU there is no way they are going home soon and are most likely fresh from the ambulance with nothing but the shirts on their backs. These items needed for "Cameron's Comfort Kits" are: Those hotel shampoos ect that collect in your drawer, toothbrushes, tooth paste, deodorant men's & women's, hair spray/gel, flip flops, socks, slippers, undies (various sizes), sweat pant & t-shirts, hair brush, waterproof mascara, shavers, shaving cream, kids toothbrushes, kids toothpaste, kids jammies(2 piece), fuzzy blanket, cozy pillowcase, hair ties, tampons ect. those rooms can get cold so a fuzzy zip up jacket, snack, fuzzy toy, any kind of tote bag to put these goodies in. Basically anything you would need if you had nothing, and were covered in something that would make you want to change your clothes.(all new please) (3) Another way to help is....you can send us a check made out to "Shirt Circuit" to help with the cost of the actual fight big bags.(4) Another way to help is....making a check made out to "OHSU Cafeteria" to put meal gift card in "Cameron's Fight Big Bag" The address you can send any of this gear for "Cameron's Comfort Kits" is:
"Cameron Merrill"
PMB 185
922 NW Circle BLVD Suite 160
Corvallis, OR 97330-1483

Please do not send any cash or checks made out to us personally, since we would have to claim it on our personal taxes as income.
The PICU items are not tax deductible, but the "Candlelighter's for kids with Cancer" donation IS tax deductible. Cameron's Fight Big Bags is not a "charity" we are just helping the PICU in his honor with your help. Making a legacy for him. I will put a link to "Candlelighter's for kids with Cancer" is an actual chairity, for those who would like to donate there. Thank you sooooooooo much for all of your love prayers and support for cheering this on and making this idea a reality. If it weren't for all of your love, prayers & positive thoughts I seriously couldn't have had the strength to do this. You can give yourself a big hug from me and know that you & Cameron are making a big difference for people during the worst times of their lives. Thank you for making our little boy's strength, sweet nature and courage leave a big mark on this world. Big giant hugs to you, thank you for being part of the "Cameron Merrill's Big Fight family" you have been there in the trenches with me, and now we are going to make a difference in Cammy's honor I can't thank you enough Big hugs to you <3

6 months

It has been 6 months today since we lost our sweet boy. It always get hard for me just before the 17th of each month but this one is different. It is a different kind of hard. With all of the therapy and medicines helping I am getting into the acceptance part of this and the reliving & obsessing over every detail over & over again isn't as dominating for my day. It is now just a deep, deep sadness. The kind you just can't put into words but can just physically feel. It is so strange to have all of these feelings. No one can prepare you for something like this, no matter what the circumstance. There is no way to predict how it will all feel. I just have to "go with it" and observe & try to learn from each low time to be ready to tackle the next one. I love to hear stories of him, or ways he has helped someone, or even that someone has dreamed or thinking of him. Its a gift. There is a FB page that really puts all of this into words that a FB friend shared with me "Silent Grief-Child loss support" it really helps put the feelings into words. This may be helpful if you know anyone else who has lost a child of any age. It makes sense of the things that don't make sense. I went out to the kids swing in our back yard the other day and (the kids had asked us to hang Cameron's swing back up) and in his swing were a big pile of dried flowers. I asked Keylin if she put them there, "Yes mommy, they are for Cammy, he would like them" this is how a 4 year old grieves. She & Cressey are still doing little things to honor him. They are doing so well with all of this. We got them 2 dogs to help bring a little sunshine. It seems to be working. They say kids are resilient but it breaks my heart to see them go through this too. They are doing pretty well, the crying for him outbursts are getting less & less. Dad is hanging in there, he is so strong. He is the rock. It makes me feel the closest to normal when I work on his "Cameron's Fight Big Bags" the wheels of progress turn slowly but this fundraiser will help BIG. The process of getting the P.O Box is taking longer than I thought but, we will get there. Slow & steady wins the race. Sorry if I am bombarding you with all of the fundraiser ads. I don't want to be annoying, seriously. Thank you for all of your love, prayers & support to get us through this brutal last 6 months. It can only get easier right??? Thank you, big hugs

Qdoba fundraiser for "Cameron's Fight Big Bags" from Candlelighters starts today!! Please have lunch or dinner and turn in your recipt at the counter & say "Candlighters"!!!

Qdoba Mexican Grill Fundraiser Today through Friday!
July 17th, 18th & 19th--- ALL Oregon and SW Washington Qdoba Mexican Grill locations are putting on a fundraiser for Candlelighters!! They will be donating 20% of their restaurant and catering proceeds to Candlelighters on those three days- but we need your help! ALL YOU NEED TO DO IS SAY YOU ARE THERE FOR CANDLELIGHTERS AND HAND IN YOUR RECEIPT!!! Will you help us meet our goal of raising $7,000 to start our Candlelighters Legacy Program and support our family activities?? Find the location nearest you and make plans for lunch, dinner or BOTH! They are even offering this for catering orders- and waiving the set up charge! So, if you are ordering in for an office on one of these days, please use Qdoba! SHOW YOUR SUPPORT ON FACEBOOK AND SHARE OUR EVENT- CLICK HERE!    FIND A QDOBA LOCATION NEAR YOU!  CLICK HERE! Thank you for your support www.4kidswithcancer.org

Thank you Jesse Reese foundation!

The Jesse Reese foundation made this in honor of our little Cameron!!! Thank you!!!

Great news!

This is Cameron last June, he was playing dress up, being a scary Dragon!!! GREAT news today!!!! I had the meeting with the organization Candlelighters. Things are going in the right direction!!! They are starting a bereavement legacy program for families to honor children who have....anyway, the "Cameron's Fight Big Bags" & "Cameron's Comfort Kits" are a BIG hit! They will help families fresh from the ambulance or new diagnosis in the PICU or Cancer kids, for families and kids, with just the shirt on their backs! Tragedy won't wait for you to pack a bag or grab a purse. Tragedy doesn't care if you have a million dollars or one. In that terrible situation, a parent doesn't want to leave the child to run to the store to get the "basics" toothbrush, deodorant, undies, ect. They also liked the "Happy Now" idea bags for kids in isolation or repeated admitting with chemo ect. This will go on helping kids and families for a long time. When we get old, Keylin and Cressey or the rest of the family can keep this going too. Cameron will make kids and families happy, if just for a moment, during the toughest time ever. Now, we just do the paperwork and work out a few more details, then we can ask for people to donate shampoo, toothbrushes & basics to fill the bags!!!!! Thank you soooooo much for your love, prayers and support!!

Your love, prayers and support have given me the strength & motivation to do this, I just can't thank you enough!!! Your love & support is helping people in a big way, so thank you for just being you Big hugs to you! I am being sappy, I am just so grateful!

Getting excited for Monday!

I am super excited for Monday to have an official meeting with Candlelighters to talk about details and get "Cameron's Fight Big Bags" off and running! I can't wait to start putting the "Cameron's Comfort Kits" together!!! There is such a need for these and I am happy that Cameron can help kids and families, and make them "Happy Now" if just for a moment, during a really tough time

I hate saying goodbye!

Making a little progress

Sorry I have been off of the radar here for a little while. Mother's day and the days leading up to it, was rough is an understatement. The twins & hubby made it as nice as possible for this crazy time. I wanted to thank everyone for the ideas for the names of the emergency parent/kiddo fresh from the ambulance or diagnosis bags to honor Cameron's big fight & short little life!! So, we used all of ides in the different versions!!!! The big giant tote bag itself will be called the "Cameron's Fight Big Bag" the contents of the bag are "Cameron's Comfort kits" for all of the people fresh from the ambulance or diagnosis. Then, we want to have "Cameron's Happy Now Bags" (since he always asked "Are you happy now? Are you better? Are you big better or little better?" when his brother & sister were crying or fighting) these can be a toy for the kids, maybe something like an itunes gift card for the teens or a Starbucks gift card for mom or dad. You get the idea. The "Cameron's Happy Now Bags" can be for kids readmitted repeatedly or kids placed in isolation ect. I am super excited this is starting to take shape. There are so many kids and families up there that need this cancer or not. The time we spent in the PICU really showed me what a need there is for just this sort of thing. There just isn't a lot of help out there like this for kids and families in severe medical crisis, cancer, trauma or severe emergency illness. There is just something about this that really speaks to me, just feels right. I just want his little life to make a BIG mark on this world & help sick kiddos. If you have any other ideas let me know. We are still in process of working out the fundraising tax ID plan. The logistics can be tricky to navigate. I will let you know when we are officially up & running!! The first step is forming a plan and setting goals, then the working out of the logistics!!! Thank you for your prayers, love & support!!

Prayers needed for Collin!

Update & prayers needed for little Collin Cameron's buddy~~ This is from Collin's mom Rachel Wilson~~Well, thanks so much! 1st) that this treatment will slow down his leukemia enough so we can go to the trial in Maryland at NIH. 2nd) that the trial at NIH would be successful for him. The treatment at NIH (national institute of Health) is a slower moving treatment. His leukemia has become aggressive and needs to become more under control before we can qualify for the trial. Thank you!

GREAT news!!!

Ohhh!!! Very exciting news!!! The organization "Candle Lighters for Children with Cancer" has contacted me & expressed interest in supporting the idea for parent/kiddo emergency, fresh from the ambulance or diagnosis, tote bag!!! More info to come.....Yayyyyyy! BIG PROGRESS ♥ ♥ ♥

I can't believe it's been 3 months.

Yesterday, it has been 3 months since his passing. Every day that goes by it sinks in a little more that he is gone. Ugh! No person should ever have to feel this kind of loss. With every hard day that we have, I think of how strong he was during all of his hard days. He smiled through even the toughest days. You have seen that big smile. He is so much stronger/tougher than I ever will be. That little smile makes me want to help other little tough kids fighting a big fight. The family made big giant picture boards of his smiley happy days for the funeral and now his bedroom is filled with those pictures. I am so thankful for those. The twins still bring him treats and leave them in his room for him. The pile is getting pretty big now. His room is left just as it was the last time he slept in his bed. I look at his Sesame Street sheets that he picked out the last time he & I changed his bed. It's the little meaningless everyday stuff from then, that means so much now. The little memories. I hug the twins a little tighter now for sure. Trying to get used to having 2 kids instead of 3 feels so unnatural. On the best of days, there is always that sense of I'm forgetting something or something/someone is missing, but all the time every day. Ok, I could go on & on.....anyway in the next couple of weeks I want to start filling the parent/kiddo bags for the PICU & new diagnosis kids in the cancer kiddos floor. I need a good name for these bags of emergency supplies for people fresh from the ambulance. I was thinking along the lines of "Cameron's Big Fight bag, it's going to be a big fight, FIGHT BIG!" but I need some ideas for names. In these bags, we would have the basics & a little card that tells his story and refers here for links to resources how to help them out. We also want to do some toys for them too. Cameron would always say "Are you happy now, are you happy?" He was a people pleaser for sure. Anyone that worked with him can agree! Oh, I was talking to the Child Life ladies at Doernbechers and they are in MAJOR need of non-latex balls & Lego sets for the kiddos. I thought I would let you know if anyone wanted to donate some to them in Cameron's honor. You can donate them directly to the Child Life department in the PICU or 10 south, or we can bring them up. Thank you so much for all of your love, support & prayers! ♥

Tough, but good day yesterday!

Wow, what a big day today was. We took a bunch of Cameron's Christmas presents, that he would never be able to open, up to Doernbecher's Children's Hospital, the pediatric intensive care unit(PICU) & the Cancer kids floor too. Thank you to everyone who gave him presents!! They were much appreciated, and now they will help other children in need too. It was so hard to see the gifts in our closet, the toys he would never play with & think of the future he would never have. We thought we would try to make some children happy out of all this tough stuff. Cameron was really good at sharing. Today would have been his one year diagnosis of Leukemia. It was super hard but it was sooooo nice to see all of the familiar faces of the super sweet nurses & doctors. We brought them some treats, but we could never come close to spoiling them, like they spoiled us. It was nice to be able to hug & cry & tell them in person how thankful we are for all of their help. I want to thank all of our nurses & doctors here too. They also helped out during rough times too. The one good thing that came out of this, is the idea to give back in some way that makes a difference to these families that are currently going through a super tough time too. We have been inspired by so many people that reached out to us, Team Cole, the sparrow club,new friends,old friends & family. We were so lucky to have all of the help, but there are people out there that don't have the help we did. This is our idea for helping out...when you get off of the ambulance, you & your child have only the clothes on your back. We thought that our help could be giving the parent & kido a big tote bag full of emergency basics. Like a mini-survival kit. That first night there it would have been nice to have a nurse hand me a bag with some new Jammie's, slippers, socks, new underwear, deodorant, a hairbrush, tooth brush, a soft blanket, a cafeteria gift card, ect. You get the idea. We could do a mom version, dad version & kido version. A wonderful friend Jaquie has been chatting with me and she has donated a bunch of big tote bags now we just need to fill them. She works with the company "Thirty-one" . They sell all kinds of big tote bags for this & she is donating some & some of the sales she does to this too. I am just in the very, very beginning stages of this but it would be a way for our family & Cameron to help out others during one of the scariest times. I am just in the idea stage, at some point I may ask if you want to donate any supplies for these gear bags. I will keep you posted. I have no clue about the details to all of this, it's just a need that's out there that I would never have known about if I hadn't gone through this myself. Another idea, is if you want to bring some big plastic lined bags like this to your local pediatric ICU or children's hospital in Cameron's honor. Thank you SO MUCH for all of your love, prayers & support. Big hugs & loves to you. Wow, I wrote a book today! Thank you!

Happy update!!!

Happy update...remember Alec, who was super sick in the PICU with us and needed your prayers...He is back in school!!!!!! The prayers totally worked!! His mom Michelle was a big help in the PICU and a familiar face from the cancer kids floor we were on before we went to the PICU. It is such a victory to see someone make it out of that world and doing well! I love good news! Thank you for the prayers love & support! It worked!!! ♥

I miss him

I had a dream last night I was kissing little Cameron & just smothering him with kisses. Thank God for dreams! I just miss him. I told the twins "That's Gods gift to us when someone we love goes to heaven. We get to dream about them & it's like they are right there." It is amazing how tears can just pour & pour from your eyes like water from the faucet. I didn't know that was possible. Thank goo...dness we have a great team of friends, family, doctors & medication to help through all of this. Time is helping too. It still sucks on so many levels, but it's helping a smidge. It's been 2 months but it feels like a million years. I just miss him so much. I wasn't done being his mommy, not by a longshot. It just feels like so much left undone. It is really just now sinking in for the twins. We are so lucky to have great nurses, friends & family doing fun special things for the twins to keep them happy. Thank you everyone who have helped us out in so many, many ways. I wish I could return the favors somehow. It really takes a team to get through all of this. We are so grateful for all of the people reaching out to us. Big hugs & loves to you!!! ♥ Thank you for the prayers too ♥

Bone marrow donation for Cameron's buddy Collin

In trying to help out little Collin who has relapsed with Leukemia (Cameron's little buddy) there is a national registry if you want to register to see if you match as a bone marrow donor for him or someone else. Collin will need a bone marrow transplant, and I know several other kids at Doernbecher's that went through the transplant process. You may just save a little ones life ♥ You can go to "bethematch.org" to check out how to get on the registry. Just an idea I had to try to help them out. :) Thank you for all of the love & prayers!! ♥

Meet Collin...one of Cameron's buddies. He needs Prayer too!

This is little Collin he was a few months ahead of Cameron in his treatment and about the same age. He is one of Cameron's little buddies up at Doernbechers. His mom Rachel is super sweet and gave me tons of tips on navigating this process. They just found out that he relapsed with Leukemia & has to start the treatment all over again plus a bone marrow transplant. This is a tough road for them. Please send as many prayers as you can, they need them. Thank you for the prayers & cheering on one of Cameron's little buddies. This is him making new buddies!!!

love this!!!! ♥

An update on my thoughts and a BIG Thank You!

Sorry I haven't posted in a while. We miss him so much. I keep waiting for it to get easier. People are so sweet in the kind things they do for our family. It is amazing the random acts that we will never know who did it but super helpful. I have some really great friends & family but I am still struggling to get "out & about". This has sure given us a whole new appreciation for what people go through during heartbreaking times. Cameron's leukemia diagnosis date, April 9th is coming up. I m not sure what we can do to honor him on that day. Maybe we will make a trip to Doernbechers and do something for the kids & nurses. I just miss him so much. The twins are holding up. Every day we talk about Cameron and the cute things he would say and how much he would like whatever it is we are doing at the moment. I went through the swimming bag and found his diapers & swimsuit. I fell apart. It is just so not okay that he is not here anymore. The part that helps is that he is safe in heaven happy and at peace watching over all of us. I will hug & kiss him again someday, it just really sucks right now. No one gets out of this life without trials & tests of strength. He showed what true strength and smiling through the hard times is. He really is my little hero. I could learn a lot from him to get through this tough time. Thank you for all of your love, prayers & support. Big hugs & loves to you.

Thank you to everyone

Thank you to everyone here. I am amazed at all of the people doing so many nice things to help make this tough time easier. People are just so sweet. Thank you to everyone who have sent comforting things for the twins. It all helps ♥ The tips are REALLY helpful ♥ This process is really hard for them, harder than they make it look. They grieve so quietly & sweetly. They do kind little thing...s for Cameron, then we talk about all of the fun things he would love & cute things he would say. We talk about what we would say to him if he were here today. How happy he is in heaven, but that he still loves us & waiting patiently for our turn to go go to heaven.He knows we still have work to do here on Earth. I am amazed at the kindness of strangers, but here since we have all been through so much here together, we aren't strangers really. It's one big family here. Sorry I have been away from the computer for awhile. We are trying to get used to the new normal, it sucks. Really sucks, but we just keep plugging along. We have all had colds and now trying to get healthy. My silly thought the other day was "thank goodness tears aren't purple or blue" that way no one can see them when I randomly cry at the store or some strange time. My super sweet therapist told me that grief is like standing on the beach and these big crashing waves of grief come in. You have a choice you can fight the waves, push fight, whatever but the wave will come in regardless or you can bend your knees brace yourself to it coming and just ride it out until it recedes back into the ocean and wait for the next one. The good thing is it always recedes, there may be more but there will be little breaks too. During those breaks you get stronger. I don't feel very strong at all, but it helps to get some tips on how to navigate this new territory myself. The pain is unimaginable and the loss is everywhere but he was super strong so in honor of him I will be super strong someday too. We are so thankful for all of the super sweet cards from everyone, including our nurses & doctors. We still have some flowers still blooming from the funeral too. A BIG thank you to everyone who sent those BEAUTIFUL flowers/treats for the twins & donations in his honor. We feel really loved. Thank you all sooooo much, it really has made a tough time easier, thank you & big hugs ♥ Thanks for the prayers & checking in on us too ♥

The link to Cameron's slideshow for the funeral

http://youtu.be/E7ElSCIFw6E

Info for the funeral

Thank you for my break from posting, I am not quite myself yet. Today we had the appointment to plan the funeral. That was BRUTAL. The people there were really super nice, but it was a mom's worst nightmare. Those decisions no mom should ever have to make. My hubby & sister were there to help. I highly recommend that. So far, during my quiet time, lots of crying, lots of (mental)medicines from my doctor and therapy starts tomorrow. This is the post I never, ever in a million years wanted to post. The unthinkable has happened, The worst pain in the world for a mother has been dealt, owchie doesn't even begin to cover it. We officially have the date of the funeral Service/celebration of life for Cameron, Saturday, January the 26th at the Suburban Christian Church 2760 SW 53rd Street, Corvallis, Oregon at 11:30am Anyone is welcome, if you are reading this, please consider yourself invited. I will probably be a mess so you may have to actually get in my face to say hi. The twins & dad will be there so please use gentle words around them. Thank you everyone for all of your love, prayers & support!!! I truly believe we made it as far as we did running on prayers!! I can't thank you enough. You really truly, sincerely made a tough time easier for us. I truly believe that!! Thank you to each and every one of you for being God's Angels
helping someone you don't know or hardly know through a really tough spot. That makes you one of the "Good Guys" one of his Angels, I plan to read every post on here once I get a little stronger mentally, right now I need some sleep. Oh, can you please pray for no more nightmares ♥ Thank you ♥ See you Saturday, January 26th if you are up for it, if not I totally understand too. Since you are all part of this family now, you are all invited. Big hugs to you & a big thank you for all of your love, prayers & support ♥

We told the twins

We told the twins last night. They cried really hard. As expected. We talked about heaven, and how some toys when broken can't be fixed and that Cammy's body was broken and it couldn't be fixed. The doctors tried really, really hard but it just couldn't be fixed. That made it his turn to go to heaven. We all get a turn to go, we just have to wait for our own turn. God gets to decide when that is. Cammy is really happy there because he doesn't have to take anymore yucky medicine, or tubies or have to go to the sick blood hospital anymore. He gets to grow his hair back too. He got a brand new perfect body in heaven & he can run & play with his Great Grandparents & Grandpa Bill and Morgan(our dog) Laney & freckles(Our kitties). He can give Jesus a big hug for us and watch over us too. Cameron can jump in the best puddles & fly kites all day. In the big picture, it won't be long and it will be our turn too & we can all be together again. I think that was just about the most simple way to get the point across. They seemed to understand. We talked about the funeral. The funeral is the place where people say goodbye to Cameron & talk about how loved he is. There would be lots of people talking about Cammy, telling happy stories and it's ok to cry & ask questions any time. People cry at funerals because they miss Cammy too. There would be a bunch of pictures of Cameron there too. There will be white box with flowers on it, Cameron's spirit is in heaven but his earthly body, that he doesn't need anymore, will be put away in a special place to rest. That is what they know. We have some kids books on explaining it, but they didn't seem interested. For four years old, I really think they really understood. That was the hardest conversation we have ever had. My therapy session went pretty well yesterday, now I am going back to bed to cry. Maybe tomorrow will be easier, hopefully I will get back to work next week. Start back to living again. There are no words for how much this hurts. Thank you for all of your prayers, love and support.

It was a big fight, but it's over. The cerebral bleed could not be stopped. The heparin from the ECMO made his blood so thin it wasn't able to clot and stop the bleeding in his head from the stroke. He needed the heparin to stay on ECMO & if we stopped ECMO it would be the same result. There was no way to stop it from getting bigger. When it got big enough he had no more brain activity. There are no words to describe the pain we are in and the gigantic hole that is left. He is in heaven now with no tubes & and a new body. His passing was peaceful and he knows how loved he is by us and all of you too. Thank you sooooo much for all of your love, prayers & support. You really made this journey much easier for our whole family. Just because we didn't get a "magical" miracle, we did get the miracle of his sweet little life & I am thankful to God for that. Please remember him as the happy smiling little boy. I can't express how thankful I am for all of you. Our little angel now has his wings. Our hearts are broken but he is at peace now. The twins don't know yet, we plan to tell them on Sunday. We need some quiet time to adjust and just & get strong before we can talk to them about this. Our whole family is going to need some quiet time to adjust to this enormous loss. Words just can't express. We will make arrangements for the funeral and let you know the details. It will be in Corvallis. Thank you for everything.

quiet day

He is too big for the portable CT scan. That means no scan, because they don't want to move him. We did move one room over just to get a fresh start. His stroke seems to have stabilized for now. That is the risk of all of that heparin keeping the circuit going. He is able to respond a little. He can't nod his head anymore but he can close his eyes when I ask him to. The good news is that he is young and this is fairly common. He may be able to come back from this eventually. The cure to a clot is heparin & it is also the cause too. We have to wait until the morning x-ray to see if the surfactant helped. It has to sit and marinate in his lungs for 6 hours. It's odds of working is slim but Seattle Children's hospital thinks it's worth a try. Oh, last night the ECMO machine turned off since it sucked air from a line. A nurse & doctor had to hand crank the flow on it until the perfusionist could get here to make the machine work again!! Once he got there, he got it back online. That was another hard day. Today has been a quieter day adjusting to this new phase. Thank you for the prayers!! ♥

tough day

So, he definitely had some kind of significant event in his brain. The jury is still out exactly how major it was. Hopefully the CT will give us more definitive answers tomorrow morning sometime. Right now, he can open his eyes to watch Diego. He can hold mom & dads hand and push it away. He has full movement on one side & slight movement on the other. He is not in any pain as far as we know.  His pupils are equal & responsive. The doctor said as far as we know, at this moment, we are staying the course of treatment. There is so much to pray for, I don't know where to begin to ask you to pray for. A miracle is a nice place to start <3 Thank you for all of your love, prayers & support <3

scary

So, still waiting for him to come around out of the fog of medicine. Hoping for the best, but preparing for the worst. The doctors are leaning towards a stroke or brain bleed. I am not there yet.It could still be the medicines keeping him foggy. They have cut them like crazy, but he is still super sleepy. Some of these drugs have a long half life. If he is still like this tomorrow we will do the CT scan to get more info. Prayers please!! ♥

Ugh

It would not be a day here without a ride on the roller coaster. So, since his circuit change on the ECMO he was wide awake and interactive. The last few days he has been more sleepy & less interactive. They attributed it to the change & his bodies adjustment to it, including his response to his meds. Ok, so this morning he is just super sleepy & not doing much at all in response to questions. There are concerns that he may have had a stroke or some kind of neurological change with all of the heparin(blood thinners) ect. So, they cut & stopped some sedation meds and we are waiting to see if he lights up. The waiting is hard. If in an hour he isn't showing more interaction the will cut some more meds. If a while after those are cut then it gets really scary and we have to try to wheel him & the entire ECMO circuit down to CT scan him to see if there is brain activity. That is a huge ordeal & takes tons of manpower... prayers please ♥

Wacky day!

Ugh! I think this computer may have a virus. Bummer! The cardiac surgeons re-sutured his canulas to secure them so he can get better flow. His heart rate was up all day & so was his respiratory rate too. He was making all of the nurses & doctors scratch their heads. That is Cameron. He is getting a reputation for dancing to his own music & rules are for other people. He just now started normalizing after a whole day of wonky. We are having his 1 month anniversary of being on ECMO today. The rumor is we have about 1 more month to go on this ride. Then we get to see what the plan is. Every day is one day closer to going home. One of the mom's I met upstairs with the cancer kids, is down here with us in the PICU and her son is SUPER sick with lung issues & ECMO is not an option for him. His mom is super sweet & pretty worried, he could use some prayers too. I told her I would ask you. His name is Alec & he is 18 with a big fight of his own. Thank you sooo much. Thank you for the prayers ♥

Nice night

He had a nice night. The x-ray looks about the same this morning. His rapid respiratory rate seems better it bounces up a little, but it is better. The cardiac surgeons were here this morning since his canula(big tube in his neck for the ecmo) looks a little pulled back. They will be back in a while to see if it needs adjustment or just watching. He is still adjusting to the newer sedation & weans. He is on the sleepier side but as long as he his comfy, I love that he can rest. When he is awake he can move more gookies. Everything is a balence here I guess.Thank you everyone for the prayers for healing, love & support! ♥

weirdness

Every day has it's own weirdness. Each phase of this has it's own new side effects. Today's head scratcher, of "hmmm not sure why this is happening" was that his respiratory rate went to the 80's, normally it's in the 30's. His heart rate went up some too. He was well sedated and the numbers on everything else looked really good. Everyone's body reacts differently, and this may be part of his healing process. We just ride it out until something shows up as a reason for it. Right now it is a mystery. The heart rhythm is much better. It was another nice gookie day. I am hoping for another quiet night ♥ Thank you for the prayers ♥

Nice night

He had a nice night. Things got a little exciting this morning. His heart rhythm did some wonky things. They think it may be due to electrolyte balance. It is a watch & wait and add more electrolytes. He is still getting tons of gookies out of his lungs, so that is really good. The x-ray is not worse so that is always good. Dad is heading out today. The ECMO machine is still happy, Monday will be four weeks on ECMO. No clue yet how much longer the plan is. One day at a time I guess. Thank you so much for the prayers ♥

Great day

You are wonderful, thank you for the positive prayers & energy! I took a nap & dad told me he posted on here :) Cameron had another quiet day, hardly even a ripple. It was really nice to get some fresh air. I knew they had just medicated Cameron & his numbers were holding steady, otherwise I wouldn't have mentally been able to leave the room. He slept the whole time & it was uneventful. Whew. It sure is nice to have one more set of eyes & ears here so I can relax a bit. The nurses are great but to Cameron, they just aren't dad. The doctor just popped in and listened to Cameron & said she can hear some air moving around in there. Even she said baby steps!!!! Prayers for another quiet night of healing ♥ Thank you ♥

Nice night :)

He had another nice night and the x-ray looks a tiny bit better. They said "It's definitely not worse, but if you want to look with rose colored glasses it may better" I think they know me now. He was smiling when he said that. I will take it!! Thank you for the prayers!!! Big hugs!! ♥ ♥ ♥ Praying for another quiet day ♥

Nice day

Ok, whatever you are doing....keep doing it! It was the first quiet day in what seems like forever ♥ Thank you for your prayers & positive lovies! We definitely needed a quiet day. The physical therapy people came by to give me some pointers. His tidal volumes(size of breaths on the ventilator) are up a smidge. Baby steps! The hard part is this is a puzzle with many pieces and some pieces are looking like they may fit, others we haven't figured out yet. It is trending the right way a little, so I will be happy. It is nice to have the new circuit now that things are settling in. We were able to wean on the meds more & he is still comfortable. He still needs me to hold his hand for pretty much all day, but I am happy to. It cuts back on my updates, but I'm sure you understand ♥ It's so hard not to be able to hold him but at least I can hold his hand & kiss his little head. I ask him all day long if he is happy or comfortable & he nods yes. That is what my mommy heart needs to know & I feel better. Thank you again for the prayers! It's working, every prayer counts ♥

Nice night yayyyy!

We had a nice uneventful night and are ready for a quiet day of healing. The x-ray this morning looks a little more equal and things are moving a tiny bit more.  He may be able to start weaning from some of the medicines again today.  The morphine is at a high level but that is a slow wean to keep him from withdrawals. He is on several meds to help out with that too.  I am thankful for it, but I also want it out of him.  Most importantly I want him comfortable, and if we can do that at lower levels that is good all around.  Keeping his liver happy(morphine is processed through the liver) is really good.  So far, all other systems are working great.  It is just those sick lungs that seem a teeny tiny bit better or trying to contribute more. It is all a big mystery until the teeny-tinys add up to big better. I am a big fan of big better. Thank you Zach's mom, you are so sweet! Prayers please for a quiet, extremely boring day of healing.  Thank you  <3

Hard day

I am really ready for this day to be over.  That was a hard day.  The change out went pretty smoothly(Super scary but smooth) but the afterward part is hard.  Now that there is all new tubing the circuit needs to soak up all of the meds again.  All of his pain medicine & anxiety meds had to be given tons of to keep up with the absorption of the new tubing in the fresh circuit.  Also his iv fizzled and he needed a new one.  It was hard to watch that. The canulas slurped up the pic-line iv & needed to be re adjusted again.  Oh, and his tummy tube needed to be re-adjusted several times too.  Now that the day is over, everything is where it should be and the medicines are working.  Rough day all around.  My nurse Kathleen got me through, she was super sweet. Oh, and the doctors probably won't do another bronchoscopy for a while since he can cough on his own. I may skip rounds again, I didn't miss anything last night either.  I don't need the recap of today, I lived it  :)  Prayers for a peaceful night please  <3

The circuit is changed. That is behind us now  <3 Whew! Thank you for the prayers!

here we go again

They have just informed me we now need to change out the entire circuit on the ECMO.  This is a big deal. It is good in the sense it is supposed to give a fresh start again.  It is super scary in that it is the same scenario as yesterday as far as stopping the machine clamping him off, putting a new one on and firing the entire thing up again. Ugh! Scary but at least it is in a controlled situation instead of in the wee hours.  ECMO Queen Carmen & team will do this today too.  She was great yesterday.  Here comes the bee-hive....big prayers again please!!!  <3

big day behind us now

That was a big day I am happy to have behind us now. One less thing to worry about for a little while. Hopefully, this oxygenator will last another 12 days before another switch out. Whew! We are still waiting to hear if they will do the bronchoscopy tomorrow. That is our big excitement for tomorrow. Oh, he is tolerating his midazolam wean and tomorrow he will be at his goal wean for that medicine. Then, they will start to wean his morphine. When he was given the "keeps him still" medicine on the previous ventilator, the only way to tell if he was anxious or in pain was by his numbers. His eyes dilation, heart rate or blood pressure numbers were some of the ways to tell if he was comfortable. Now that we can talk to him, we can wean those medicines that help with pain or anxiety to keep him comfortable & not at massive high levels. He is doing really well tolerating the weans. I just spend a lot of time holding his hand while he naps during the day while he gets used to the partial clarity. The ambian at night seems to really be helping him sleep too. I am ready for another quiet night of healing. Every day is one day closer to going home. I will never take "normal/crazy" life for granted again. Thank you to everyone who took time out of their day to donate blood in honor of Cameron ♥ Thank you again for all of the prayers & helping to get us through this wild, crazy day  <3

Nice night

He had another nice night ♥ The x-ray looks good, about the same as yesterday. Not worse is good. Impressive gookies. The rumor is we get another bronchoscopy tomorrow sometime(it's a good thing). So that is something to look forward to. The plan today is keep up the good work getting gookies out. Not very exciting, but I am fabulous with not exciting. Quiet is very good ♥ Thank you soooo much for all of the blood drives & donating blood!! It is a wonderful gift!! It is always the right size, the perfect color and VERY useful!! The prayers and positive thoughts are super wonderful gifts too for all of the same reasons. Thank you all sooooooo much!!! Big hugs to you ♥ ♥ ♥

1. Thank you everyone who are involved in the blood drives & donating. Every time I see the nurses open another bag of it, draw it up into syringes and feed it to the ECMO machine, I feel so thankful that some stranger out there, took time out of their day to provide a lifesaving gift for my child. I am in awe every day. So many people are helping Cameron through this, in so many ways. I don't know where to begin to tell everyone thank you. So, I will start here, THANK YOU!!!! It was just a quiet day, he seems to be doing some hard work getting gookies out. The x-ray in the morning will tell us more. He had a urpy tummy today but they made some adjustments with his tummy tubes and they seem to be better. The PICU is filling up again, cold & flu season is brutal. I guess next month is the kick-off to RSV season. RSV is a brutal virus too. There are so many ucky, mean bugs out there. It is so weird to be here on the front lines of it all. Watching kids & families come & go and all of the battling that goes on here. There are so many, really, really smart people here. I just want to soak up all of the info. You are going to be an expert in all of this too before this is over. Cameron is really into his Diego movies, Thank you Krista for the surprise movies!! Thank you all for all of your love, prayers, positive thoughts, energy & support!! Every prayer counts <3

   
   
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