June 24, 2011!

Jakers is doing better today. Yesterday was the clinic day. I kicked Heidi out of the house and made her go to Vegas with her mom and Cole and Crew. She went to Thunder from Down Under and had a great time. You know what they say, "What happens in Vegas stays in Vegas!" Jake and I went to the clinic and we were on the "express track"...their words, not mine. So we were there from 10:30 until 3:45! Talk about express. He needed platelets and got the peg shot. It's a shot in each leg that, apparently, is pretty painful. I took the tube out the other day because I didn't think it was doing anything. Jake hadn't talked in 2 days. That tube really causes that kid problems. So he is now on TPN, Total Parental Nutrition. There are some pros and cons with it, but we think it is the best thing for him right now. Basically he has an i.v. going for 20 hours a day but it gives him about 50% of the nutrition he needs during the day. His appetite is slowly increasing but he still has the runs. Hopefully he is only on TPN for a month or so. We really need to get his weight up. We start the next phase in a few weeks and it's called, "Deferred Intensification." It's supposedly more difficult than the first month. Sounds super!!
I sold my dirt bike the other day. Heidi told me if I sold it I could get the ski I want. If you go to radarskis.com and go to products and then skis it's the RS-1. I can't wait! They're sending it tomorrow. My dad has been talking trash about how much better he is than me, but not for long!! Quick shout out to the pops, he got 4th at Regionals last week up in Seattle. He missed 1st by 1.5 bouys. Not bad for an old guy.
Last thing. When we were at the hospital the other day our doctor gave us our final chemo date! June 24, 2011!!! Right around the corner. Luckily I will have my new ski to help the time go by quick!!!
Hondo

home again

Life has changed dramatically since Sunday.  We are home, but did not realize we would learn enough to get our nursing degrees.  Jake now has to have around the clock care with tube feedings every four hours, antibiotics through his port 3 times a day, his daily dose of meds morning and evening and oh did I mention the shot we have to give to him in his leg every day at exactly noon?  That is a fun one.  We are once again also on steroids, so the yelling and screaming are once again part of life.  We are starting to wonder if we are ever going to get our little boy back.  It has been a frustrating few days but hopefully by next week, life will return to

as normal as it can be.

Few pics from our hospital stay...

Feeling good enough to do a puzzle!  (Jake's new favorite thing to do...)

  

quick update

Jake and I are still here at the hospital. His counts have been very low and he had a fever although that is pretty much taken care of. His white blood count is low and his ANC is 0. It was at 600 the other day, then 63 two days ago and now zero. He had a blood transfusion and platelets yesterday. Today he had a lumbar puncture, one of his chemo's called vincristine and he had the tube put back in his nose. Hopefully it works this time. This will be our third night in the hospital and we are hoping to be able to go home tomorrow. Hospitals are nice but home is better. My battery on my phone died so I figured I better give an update for those that want to know.

We're Back!!!

Heidi and I went to Tahoe on Thursday and had a fun couple of days golfing and enjoying Tahoe. Then on Sunday Jakers woke up with a fever and we called the on-call doc here at Primary's. He suggested we go to the ER in Reno. We went and sat in the ER for about 8 hours and then last night they had us stay the night at the pediatric unit in Reno. They have really nice facilities there but they don't have any sort of oncology unit so they never see kids with such low counts as his. We decided to fly back to Utah today so we could go to Primary's. The doc's in Reno were a little worried but our Oncologist wasn't worried and so we weren't that worried. It's interesting seeing how the doc's in each field look at things. Our doctor wasn't worried about his counts and just wanted us to come in and stay a few nights at Primary's to get blood and platelets and figure out why he has a fever but the doc's in Reno were pediatric doc's and they were really concerned. Each was very good at their field but I never thought I would be so excited to be at the ICS here at Primary's! Anyhow, Jakers has a fever and they are going to get that figured out. His fever maxed out yesterday at 102.7. Tomorrow he has a back poke and will probably get the feeding tube stuck back in his nose. We'll see how it goes. Until then, we're chillin' at Primary's. Our new normal! By the way, I played pretty good golf for all of you that were worried...although I didn't get to ski while we were there!

Birthday Boy!!!

A few pictures from Cole's birthday--be prepared for an overload! Monday, we had his friend and family party and then on his actual birthday, we wanted to spend time with just us. Although it did not turn out the way we had originally planned, I still think he loved it if you can't tell from the pictures--he was a little excited most of the day. He was spoiled rotten and LOVED being able to turn four, but for some reason, did not want to turn four until he went to bed that night. We kept asking him how old he was all day and he kept saying he was not four yet...finally, when he went to bed, he turned FOUR years old. Love that kid.

I am so glad we had a birthday party with friends and family the night before his actual birthday. We went to Backyard Adventures and had a Safari Party! It was so fun and he loved it... although Cole does not enjoy being the center of attention. He tends to stick out his tongue when he gets shy--kinda cute! (You can see it in most pictures if you look hard enough!) The only people he wanted to even come to his party were Colie, Paigie and Rylie... no one else, even grandma and grandpa. He decided to change his mind when he figured out that he would get more presents if more people came. He was spoiled rotten and loved every minute of it! Thank you to those of you who came and made his birthday so special... sometimes we worry about him being a little left behind with a new baby and Jake being sick. But I think the evening turned out great and was just what he needed to feel special!!!

So, as of right now, the tube is out of Jakes' nose. It fell out Thursay at 4:00 in the morning...he threw it up. Me and Jeff were able to get it back down him (seriously, I don't know what that hospital was thinking...NO one should have to do that to your kid--it felt like we were torturing him.) We lowered the dose the next night, by half, and he threw it up again at 4:00 in the morning. Although this time, we were not around to put it back in. Me and Jeff came to Tahoe for the weekend and dropped the boys off at grandma and grandpa's. I don't blame them for not wanting to stick that thing back in, it is too traumatizing. We were going to drive back since we are only 30 minutes away, but contacted our doctor and bless her heart she said to just leave it out since he is eating better. Our doctor is GREAT!! She has tried so hard to keep this process as simple as possible and will not do anything unless absolutley necessary. She will call on a regular basis just to make sure we are okay. It has made us feel so well cared for and grateful for the care we have recieved so far.

(Jakers does NOT want that tube back in and keeps saying, "I'll do whatever you want me to do...I'll eat and eat but do not put it back!" And he has kept his word so far. We will see what they decide on Tuesday.)

Birthdays and feeding tubes!

Today was Cole-train's 4th birthday!!! We set up a safari tent and animals in our front room last night for him to wake up to. We were really excited to celebrate and have a good time. Heidi made cupcakes and it was going to be fun. Unfortunately, we called the doctor yesterday to report on Jake's weight and they told us to come in today for a feeding tube. The appointment was at 10:30 and we thought it would only take a few minutes. We were a little off on our guess! He had to get saline and then platelets. They both take forever to get and then you have to wait for things. Now I know why you are called a patient. Takes FOREVER. Then we had to get the feeding tube put down him. The first time they put it down, it went pretty easy. He gagged a few times and fought like crazy but they got it down him. There's nothing more exciting than having to hold down your kid while he screams and screams. Well, they get it down him and we go to leave and he rips it out. So we have to do it again. Heidi was out in the hall with the nurses and so it was just Jake and I in the room waiting. After he stopped screaming for a few minutes and yelling and telling me I was fired he put his head in his hands and started sobbing and said, "why didn't I just eat more? Dad, I promise I'll eat more if you don't make me get the tube." Fun times. Don't let your kids get cancer...I wouldn't recommend it. I know there will be some serious growth, personally and as a family, from all of this but it's tough to see it on days like today. For me, today was one of the most difficult days we've had since we've been home from the hospital. They were able to get the tube down the second time and things went well from there. It was actually probably good that he ripped it out because it showed him we have to have it in and we'll just keep putting it back in if he keeps ripping it out. He's been a champ about the tube since we've been home and he ATE when we got home!! He ate all his mac and cheese and french fries from Red Robin and then ate some of Cole's! He's on a mission. The tube is actually going to be great for him because we have to get his weight up. He started out at 95% of target and is now down to 80. Another positive is that it's really easy to give him his medicine now since it's all liquid and goes down his tube!
Cole's birthday was not exactly like we planned but we were able to have the safari this evening and he opened presents and had a good time. He was so great today and shared everything with his "brudders." It was cute this morning...Jake was up and Cole walked down stairs and Jake yells to him, "Who's that big 4-yr old young man? Come over here and give me a big squeeze!" Cole always tells us who he dreamed about the night before and today he said he only dreamed about his brother Jake...and that's it! Those boys can be best bud's and mortal enemies! Typical boys!
On another positive, there is no sign of leukemia and Jake is doing well. We feel so incredibly lucky to be in the situation we're in. We have a great family and friends. Jake is such a fighter. It was fun to watch him and Cole try to figure out how the I.V. pole works and how the little drip maching works. Jake saw himself in the mirror and smiled. He thinks he looks like someone from Star Wars with special powers! We'll post some pictures of today later. That's Heidi's job!

"Our Precious Princess"

A few years ago Jake, Cole and I were deciding what our superhero names should be.  Jake and Cole have both been every superhero imaginable and "Hondo" has, obviously, stuck with me, but when deciding Heidi's name, Jake said she is "our precious princess."  So that stuck.  I decided to brag a little and show some fun Heidi  pic's. (Disclaimer:  These pictures are done by me and have not been touched up and Heidi has no connection to them)

Heidi and I met up in Tacoma, Washington at the University of Puget Sound...we were EFY Counselors doing a session up there.  A year later (May, 2001) we were married and here we are 7 years later.  I have decided to do one of those abc things on Heidi.

A-She's awesome.  B-And Beautiful!  C-Obviously very cute! D-Determined...once she gets something in her mind it doesn't go away until it's done!!!!  E-Entrepreneurial...she started this little business about 4 years ago by taking classes online from New York Institute of Photography and has done incredibly well.  I am very proud of her.  She works very hard.  F-Fun!  G-Gospel oriented.  She has a strong desire to follow the Lord.  We're going to skip a few here because this will take forever.  Q-Quiet...until you get to know her then she talks and talks and talks (like Cole)!  R-Reno!!  She's being patient why I try to live out a dream and build (ski all the time) water ski lakes out in Reno.  (www.diamondhotsprings.com Just a little plug!) I have to travel a lot and she has been very patient in letting me do this.  S--stubborn....but always in a good way! T-Totally awesome!  Our family is lucky to have Heidi around.  2008 has been a really up and down year for us and she has stayed tremendously strong.  I'm lucky she decided to drop her standards a little bit and take a guy like me!  We love our Precious Princess.

clinic update

Just thought we would give you a quick update on Jakers clinic day today... it ended up being much longer than usual, due to the fact that he had to get a blood transfusion and have a few more tests run.  He was up eight times last night to go to the bathroom.  Twice he did not make it there on time.  His poor little body is shriveling away and they are starting to get worried about how much weight he has lost.  On the day that he was diagnosed, he weighed 45 pounds, today he was down to 36.3 pounds.  Almost a 20% drop in two months.  If he cannot get some weight back on and start feeling better by next Tuesday, they are talking about putting in a feeding tube.  His counts also came back very low, thus the transfusion, which will hopefully give him a little bit more energy to start eating and feeling better.  Even though it was a long and exhausting day, this little guy continues to amaze us with his strength and bravery... two PEG shots, his port accessed AND a transfusion all in one day... we got no more than a few well deserved outbursts from him.  He did not move an inch for the shots which is leaps and bounds from where we began, he even interacted with the nurses and the doctors for once, playing with toys and puzzles and books.   It has and will be a long and difficult road, but there are small steps that we have taken in the right direction-- it always could be so much worse.  Such brave kids!  If only we as adults could do half as well...

4th of July week

We had a wonderful 4th of July week--beginning on Tuesday when we got a brand new swingset!!!  Thank you Grandpa!  Jake cannot go to the park...so someone thought it would be a good idea to bring the park to him.    We are also hoping that it will help strengthen his legs somewhat.  Who knows if this will ever actually happen at this point in time--it is starting to get a little discouraging since he is still so weak.  The boys LOVE the swingset and it has already gotten much use.  Crew even loves to swing in the baby swing and will giggle if you push him.  So cute.

This is probably the biggest smile we saw in Jakers the whole week before this.  He had a tough week, but I think he thought it was worth it in the end--Jeff took him to Reno for a small  break.  He and Jeff were on the plane, and he looked over at Jeff and said, "Daddy, I am just so excited I might explode!"  Those few words made the risk totally worth it.  He did not feel very well all week, but had so much fun being catered to hand and foot.  The poor kid has not had much to look forward to the last couple of months.  He had been on steriods for five days (Yesterday, it marked one week since his last dose.)   It was double the dose as before and mixed with another medication he was on, it completely knocked the life out of him.  He could not walk, but this time around he was constantly sick to his stomach, so he could not eat.  There is nothing that sounds good to him.  If he asks for something, he gets it, but most of the time takes a bite and chews for about 10 minutes, swallows and won't touch it.  He currently weighs only 37 pounds.  IF he eats, he throws up, or else it comes out the other end.   We are a little worried about him losing so much weight. 

Lucky me, I got to stay home with some much needed time with Crew and Cole, who needed a little bit extra attention.  Cole has become very clingy to me the last couple of weeks, so it was a good break for everyone when Jeff and Jake left.  We had a wonderful 4th... swimming and eating and fireworks...and oh, did I mention the 2.8 mile hike up AND 2.8 mile hike back with two children?  Yes, that is 5.6 miles total.  We did not realize at the time that it would be that difficult of a hike.  We went up to Lake Blanche in Big Cottonwood Canyon.  It was beautiful and very worth it--but let's just say I am grateful for Pa Randy and Jason helping me to carry those two boys!  That hike back down the mountain was LONG.  Both boys did surprisingly great and fell asleep on the trail.  

Crewsers...

Crew is now four months old and already knows that he runs the place.  He has quickly learned how to roll over and will roll all over the room to get where he wants to go.  This morning, he figured out how to lay on his belly and get on his knees and then scoot himself forward.  We are hoping it was an accident and that we do not have another early crawler... I don't think I could quite handle making sure that Cole picks up all his 'little' things off of the ground on a daily basis since he loves to lay them out and has a specific order to the whole thing (must be that OCD thing coming out in him!)  Crew is the BEST baby--and I am not just saying that because he is my kid.  He is constantly smiling and loves to be kissed and held.  The only time he will ever even fuss is if he is hungry or tired... and he tends to like to know what is going on, so that means he fights the sleeping thing.  He is our little lovie, and we really don't know what we ever did without the kid in our family!