TWAS THE SEASON!

I'm a few months behind on my blog, but Christmas was too good to not blog about :-) We tried to take advantage of all the fun Christmas activities and had a really great December. We went to the Festival of Trees, a few different outside Nativity Scenes, Temple Square and some fun parties. Sawyer was so much fun this year because he actually understood what was going on. He was really interested in Santa and his elves....he constantly asked if the elves were watching him, but that didn't seem to keep him from being a little naughty. He has been a handful the last few months, but I think we may have turned a corner...crossing fingers. I love the little guy...he has just been what I'm hoping is a typical 3 year old:-) I have always loved Christmas, but this year was definitely the most meaningful. I love the hustle/bustle of Chrismas....I can't help it! I love that it's busy and their are so many fun things to do. I love the excitment of Santa (even though I am 31 years old). I love that people are in such a "giving spirit". I love that everywhere you go is crowded(weird I know). I LOVE Christmas music!! Love Christmas decorations!! I love Nativity Scenes and the truth that they represent. I love going to church and singing the Christmas hymns and LOVE our ward choir christmas program. AMAZING!!! I know that many of the things I've listed above are very "superficial", but this year I loved the "superficial" things so much less. I still enjoyed them, but as cliche' as it sounds I really just LOVED having my little family together. I loved that Graham got to experience Christmas with us and was able to get out and see/do things. We went to an outdoor Nativity Scene that our Stake put on and it was so special. I should say fun or something, but that would take away from the amazing feeling that was there. It had just started snowing that night and the manger scene was a real life little family....baby and all! For some reason seeing "Mary, Joseph and a "real" little baby Jesus" made it very different for me. They had a nice big heat lamp on the ceiling right above the baby so he was nice and warm. Not sure how to even describe it, but it was such a nice night :-)

Festival of Trees

Sawyer looking at the "super-hero" trees

Playing in the snow

4-wheelin

Christmas Eve

Christmas Eve with Dad

Christmas morning :-)

Christmas night with Dad

Sawyer with G & G Shippen

Sawyer with G & G razor riding

Graham with his Oncologist...Dr. Barnett (we Love him!)

Nativity Scene

Visit from G & G Shippen

Temple Square :-)

Our favorite babysitters!

Visit from our "Christmas Elf" (aka...G&G Shippen)

Santa!

We spent Christmas with Nathan's family at our brother-in-laws families cabin. It was such a fun Christmas!! So fun waking up Christmas morning and it just being utter chaos with all of the kids excited and trying to look at their toys. We had a lot of fun going to the rec center swimming, sledding outside and just hanging out! After Christmas we went to my family's house and stayed until New Years. Again, lots of fun!!

Christmas Eve with Schanz cousins

I meant to tell about this in the previous post, but we were able to take Graham's feeding tube out mid-December! One night he pulled it out right before bed and I did not want to put it back in so I decided that I would wait until the next day. The next morning I thought, "why not just leave it out and see what happens"?? He drank out of his bottle pretty well that day so I decided to see how day 2 went? He did even better.....so little by little he was drinking more and that was that....no more feeding tube! I had been working on eating and drinking with him, but it wasn't until the tube was gone that he just kind of did it. I guess he decided he didn't want it anymore :-)

I don't even know where to begin. I have a lot to catch up on!!! I have been wanting to have a book made of my blog, but have been needing to add a few more things to it. For starters Graham turned 1!!! His birthday was the end of November and we had a fun little party for him. My family was all down for Thanksgiving so we just had a family party. He has been really liking Elmo so that was the theme :-) He still had his feeding tube so the "cake-eating" wasn't too exciting for him, but he liked playing in it. It was the reddest frosting I have ever seen and he seriously looked a little gruesome with it all over him. So so happy he made it  through his 1st year of life....HAPPY 1ST BIRTHDAY GRAHAM.....Here's to many more little guy :-)

Graham's 1st Birthday Cup-Cake

A little gruesome :-)

HAPPY 1ST BIRTHDAY GRAHAM! WE LOVE YOU!!!

Benefit Dinner for Graham

I have a lot to catch up on....so here it goes:

Graham's benefit dinner turned out to be such a special/great night!! We had about 200 family/friends attend and it couldn't have been better. Our family and friends put so much work into making this night what it was. We are beyond grateful, appreciative, etc.....to them. We had a silent auction, dinner, program and live auction. It was a very emotional night for me. I had a hard time "pulling" myself together :-) Words can't describe the sincere gratitude I felt for everyone and all they have done for us. A sweet photographer took pictures and we also recorded it so that one day Graham will be able to see what so many people did for him. AMAZING NIGHT!!! :-)

Joseph Smith Building

Child Cancer Awareness Pins for everyone

Table Settings

The Auctioneer and MC (AKA: Nathan's brothers)

Me and a friend :-)

Speaker: Megan (soaringabove.com)

Nathan :-)

Me....bawling :-)

Couldn't have asked for a more AMAZING NIGHT! :-)



Quick update-

I have way too much to say tonight, but it will have to wait. Just a quick recap/update! Life at home has been great! We have been trying to get back into a routine and adjust back to "normal" life. "Normal" is always changing :-) First things first! Graham gets his line out tomorrow!!! I cannot tell you how excited I am to get that thing out! I can't wait to put him in the tub and scrub every inch of him. For the last 7 months I haven't been able to do this and he always seems a little dirty. Always smells like hospital....sterile.....throw-up....antibiotics, etc....everything he isn't suppose to :-) Since our last round was cancelled we never got to ring the bell in ICS celebrating Graham's last chemo. So...tomorrow before his surgery we are going to ring the bell :-) Even though he doesn't know what he is missing, we do, and I want to video it so he will have that memory....to watch :-)

Last night we took Sawyer and Graham trick-or-treating around our neighborhood. They both had so much fun. The first thing Sawyer did when he got home was dump his candy out and line it up...pretty funny :-)

Dragon...he thought he was a dinosaur though :-)

Hangin in the stroller

The benefit dinner for Graham turned out to be such a great night. I will post more details later, but I really can't thank everyone who came or played some kind of part in the night enough....Pretty amazing/special night :-)

Our family/friends are holding a benefit dinner for Graham on October 14th at the Joseph Smith Memorial Building. If you are interested in attending please contact either Mckenzi Thompson at 208-406-6412 or Ashley Jackson at 801-372-8400 or you can go to www.helpgraham.org

Suprise! Suprise! Suprise!!!!!

Today we had our routine bone marrow aspirate at the hospital. We first met with our oncologist to discuss everything. The first thing he said when he walked in our room was, "Well, I have some good news for you guys." I immediately thought...what could really be that great?? He then let me know that he had just returned from the Oncology conference and that a major thing has changed in regards to the protocol treatment plan for AML patients. After extensive research they have concluded that the 5th round of chemo is not beneficial in any way. There is a 3% fatality rate in the 5th round due to it's harshness. He then let me know that it is up to me and Nathan to decide if we would like to continue on and do a 5th round, but that from here on out it will NOT be part of an AML patients chemo schedule. Sooooooo......GRAHAM IS OFFICIALLY DONE WITH HIS CHEMO!!!!  He is now considered to be in remission and will continue to have regular check-ups. If he were to relapse the doc said that it would most likely manifest itself in the same way....skin lesions. So he let me know that for the next 5 years I need to pay close attention to any rashes or spots on his skin. In about 3-4 weeks Graham will go in and have his broviac line removed, an EKG on his heart (this is to make sure his heart is functioning well due to the chemo he received this past round) and they are also going to talk with the dermatologist and determine what to do about the lesion above his eye. They might laser it off....but I'm not sure yet?? He will then have weekly visits from our home health nurse to draw labs and check all of his counts (ANC, white blood counts, hematocrit and platelets and make sure he isn't in need of any transfusions and that everything is looking good) also, weekly visits from a speech therapist to help me with Graham's eating so we can get him off the feeding tube and of course his monthly visits up to Primary's.

We finished our 4th round on September 20th! It has been such a great week+ at home. Graham is rolling like a mad man and can almost sit up by himself!! He has progressed so much in just the last few weeks. It is of course so so so nice to be home :-) I love not feeling rushed when I come home at night. Usually i try to put Sawyer to bed before I go back up to the hospital, but if he doesn't cooperate then I have to leave and have Nathan or grandma do it. I always think that if I put him to bed he won't know that i leave afterwards. But, he is so much smarter than I give him credit! I will put him to bed and he asks me, "Are you going back to the hopsfeetal now?" He knows.

Finding out today that we will not be going back to "live" in ICS I had alot of different emotions....all of them good, but I was not prepared for this news. At first I had so many questions....one of them always being this question to the doc, "What would you do if it were your child." Doctors always give you your options...of course. Our oncologist is very good at leaving emotion out of it and just giving us our options. But, whenever I ask him this question I always get some emotion behind it and a very firm answer :-) I usually go with that option....of course given I feel good about it. I feel very good about not going forward with the 5th round. He left the option up to us because it has always been in our "plan". To be honest I am very sad to be leaving so many of the nurses behind. I absolutely love so many of them! Of course it is their job to take care of Graham, but you can tell that they really love the little guy and that means so much. I am just sad that I didn't get more pictures of them :-( maybe we will have to make a trip up to ICS and take some pics!! We will miss them all so much and I will always be grateful for the way that they took care of our litte "True Grit" ;-)

So my little Sawyer is a funny funny guy. He does and says the funniest things. Sawyer is a very particular little boy. He LOVES to line things up and organize his toys. Below are some of the pics that my mom has taken in the last few months. He recently decided that he was going to flush a handful of his dinosaurs down the toilet. He came out of the bathroom and informed us of what he did....we weren't sure if he was telling the truth. Sure enough the toilet was full on clogged!! Our plumber came and after "snaking" our toilets he pulled out 2 dinosaurs and a horse. Nice :-)

Like I said....He lines up everything!!!

Again...

And Again...

and....

Again!!!

My mom is a bit of a neat freak....I think all the months her taking care of him.....she rubbed off a bit :-)

So we are now home.....for good! I cried for about an hour today. I think it was just such unexpected news and I was so floored by it that I didn't know what else to do :-) I can honestly say that little Graham has endured a lot in his short little life. I know that there are others who have had it worse and also better, but regardless my little Graham is....as cliche as it sounds....a Fighter! I think back to the night that Graham went into respiratory arrest. I have imagined over and over how it all unfolded. I know the nurses that were there and in particular the nurse that performed CPR. I will never forget her face.....and now that I think about it I'm not sure if she knows just how grateful I am to her. I think about my sweet sister-in-law who made the call to me that night. I've thought so many times how scared she must have been and know that it is something she will never forget and I will forever be grateful to her and how attentive she was to recognize that Graham was struggling that night.....and so grateful she didn't hesitate in calling the nurse in.
Graham also had his horrible fevers this round that would not go away.....he just layed in my arms day after day and night after night and whimpered....those are sounds that I will never forget. I feel like I held him for 37 days because that is the only thing that brought him comfort. On day one of his 2nd round he got sepsis. Sepsis by definition is: A severe illness in which the bloodstream is overwhelmed by bacteria. Some of the symptoms that Graham had due to this were: drop in blood pressure 50/20 resulting in shock, chills, hypothermia and shaking. I was holding him at the time and his skin turned blue and then gray and he was cold and clammy.  When sepsis occurs in an immuno-compromised child it is life threatening. After staying in the PICU for this he was sent back up to ICS to continue with his chemo. Next up was his liver clot. I remember the day that I noticed his tummy getting bigger and harder....he was so incredibly miserable. Then came the mouth sores/mucacitis.....Hell! sorry that is really the ONLY word to describe this one. I am beyond grateful that he will never remember the few weeks that he had these.....awful. The reason I re-write some of these things is of course to remember, but also to never forget. I don't ever want to forget the things that Graham endured and overcame. Yes he is a baby.....and a very tough one :-) People always talk about how resilient kids are and I think it is because they are very focused on the here and now. Things that have happened to them are like water under the bridge and it seems (at least my take on it) that they are just grateful for the moment. All I can say is kids are so positive and beyond tough!!

Last, but not least.....September is Childhood Cancer Awareness Month. Sadly, I never realized this until Graham was diagnosed. A few statistics: 46 kids are diagnosed with cancer everyday....7 kids die everyday from cancer.....Over 40,000 children are being actively treated for cancer this year......Over 13,000 are newly diagnosed each year. Awful how many kids have to go through this :-(  From here on out if you didn't know...now you do :-) Every September remember.....Children get cancer.....and ALOT of them!!! Please do something....even if it is as small as wearing a gold ribbon during the month of September. Thank You!!!

1st day of counts!

I am seriously a horrible blogger!! Graham has been doing really good this round...he got a couple of VERY minor mouth sores and had fevers for just a couple of days, but they didn't end up being any kind of infection so went away fast. Today he finally had some counts!! His ANC was 200...it will probably bounce around for a few days and as soon as it's steady we will get to go home for our little break. I feel like this has been Grahams recuperation round. He has been able to progress and work on a little catch up. He is still behind on his development, but we are working on it. He is working on sitting up right now and we are still doing the tummy time stuff...which he isn't a huge fan of. Still doesn't take a whole lot by mouth...chews on the nipple of his bottle, dry heaved when I introduced bananas and still does after many attempts and now he isn't wanting his rice cereal because he thinks it's bananas!!! I also tried carrots and he hated those as well. Today I gave him a teething biscuit and had to force it in his mouth...once he tasted it he actually really liked it. He chewed and sucked on it for a while...I was amazed. Maybe it's been the texture that he doesn't like??? Who knows, but we will keep at it.

We finally got to stop his Lovenox shots!!(blood thinner shots from his liver clot) Happy day for me....and I'm sure even happier for him!! His poor chunky thighs are always so bruised up and it's hard to find a place to give him one. He had another ultra-sound and everything came back looking great so that's that!....I hope:-)

Today is day 29...this was suppose to be one of the harder rounds and it's interesting that it has ended up being Grahams easiest one. The doctors said that this round is an average of 31 days...we will most likely be going home in the next few days...they really have this down to a tee.

Graham is starting to really show that he is a normal baby...what I mean is he is throwing baby fits...he gets mad and arches his back and throws his head, he is FINALLY starting to NOT like his lazy-boy....AKA bouncer, and he really let's you know what he wants and does not
want. Just today he started shaking his head back and forth like " no, no, no" it was so funny and cute. I'm very grateful for the baby fits etc....it makes things/him seem more normal. He has such a cute little personality and the best belly laugh. He looks JUST LIKE SAWYER when Sawyer was Grahams age. They have different eyes, but other than that they are their daddy's sons:-)

Our next...and FINAL round is a little different. We will come back and Graham will have 2 days of chemo and then they send us home and we wait for his counts to drop to zero. They say this usually takes about 5 days. Then we come back for a few more days of chemo and then of course the waiting game. So it will probably be the start of November when we finally finish. Never thought we would make it...it felt like such a long road when we started this and almost not do-able. But, here we are....almost!!

After we are done it will be of course routine check- ups. Since Graham's leukemia is in his skin it will be pretty much impossible to "know" if it is coming back or completely gone unless it shows up in his marrow or he starts to develop the skin lesions again. I hope I don't go crazy analyzing every inch of his body on a daily basis! Good thing he is still young enough that he cant object...otherwise I would go crazy if I had to leave it up to him to do this himself. It's stressful not being able to look at the results from his bone marrow aspirate and know for certain that his Leukemia is gone. If he gets a pimple in here they biopsy the thing just to make sure it isn't anything more.

Before I was married I would have never thought that my married self would be such a worry wart...then I had kids! I'm sure many people can relate...or at least I hope so:-) Both of my boys are winter babies so I have always been very cautious and nervous about all the bugs that float around during the winter months. I have always been terrified of RSV and have gone maybe overboard to steer clear of my kids getting it. Then Graham gets leukemia...just goes to show how little control a person has. I mean you do...but at the same time you DONT?!

I'm not exactly sure what I'm suppose to learn from this...but I do know a few things I will do differently. Maybe in another post I will tell you. For now I'm just so grateful for a good round!