Shave Our Heads for Jake!!

(Disclaimer:  Heidi did not take these nor did she touch them up...yes, we are all this good looking without her help!!)  Heidi doesn't like me putting pictures on the blog without her approval.  Must be a photographer thing!  Anyhow, My cousins, my dad and my brother in law Tyler decided to shave their heads for Jakers.  My brother in law Jake did his as well but I don't have a picture yet.  Here ya go!!  By the way, I can't figure out how to make it so you can blow these pictures up.

o. 

new photography site

Here's a little pub for my sweet wife's new photography site...it's heidilynnphotography.blogspot.com.  Check it out and leave lots of nice comments about what great work she does.  She just started it the other day and I'm sure she'll update it almost every day.

A Vicious Cycle

Life is now back to how it was a month ago.  Apparently chemo is just a vicious cycle for the first six months!  Six hours after Jake had taken steroids (yes, we are back on that lovely drug), he was woken up because he "hurt his legs".  This morning the word 'meanie' has come back full force.  No loud noises, mac and cheese for breakfast and then on to Kneaders.  It is amazing how much quicker the side effects have hit him this time around.  He is on a higher dose and luckily he only has to take them for five days this time around.  He is now also on a new med called methotrexate that he takes once a week...six pills in one day, for two months.  They are the dreaded 'mouth sore' pills, so we now have that to look forward to!  Luckily Jeff's mom came into town this week to help me out since Jeff is in Reno.  I am thinking about asking her to stay, oh, forever.  She has made my life about 75,000 times easier.  Love those grandma's.  Don't know what we would do without them half of the time.  

Yesterday at the clinic he did so well, it was actually incredible with how it has gone the last few weeks!  Home health care had come and accessed his port the day before, so we did not have to deal with that... I was shocked to realize that he did not argue or complain once except about his video games, which are not going to  make an appearance in our household for awhile.  I just don't think that Jakers can handle it!  I got kicked a couple of times yesterday and the PSP got thrown on the ground at the clinic because he lost his  game, but after he calmed down he even ventured out and played with some puzzles at the clinic, which he has never taken an interest in before.  We really think that he is starting to become used to everything which is great for us--ten times less fight!  

We also realized the other day that we never post much about Cole-train.  It has been difficult at times because the poor kid seems to be stuck somewhere in the middle of all this mess.  He is doing well and has adjusted to all of the attention Jake receives as he tends to get quite a bit from family members and friends.  This past month has been such a good break for him and us as he and Jake have actually been best buddies again.  (well, until this morning rolled around.  Dang steroids.)  He is very excited for his  birthday coming up and is such a good kid.  He loves to tease and tease and tease some more.  (Hmmmm, wonder where that came from daddy!?)  He is still our shy boy and tends to stick his tongue out if he is in large groups of people and doesn't know you.  But if you do know him, be prepared to have your ear talked off!  I drove home with him the other day and heard all about Jay- Jay (his imaginary friend) and all about his favorite super heroes and sang itsy spider and Had a Bad Day about 15 times.  Ya gotta love the kid.   He really is so stinkin cute it is hard not to fall in love with him!

BEFORE and AFTER...

We were looking through pictures from a few months ago and were shocked to see the difference two months of chemo has made on Jake.  He does not even look like the same kid to us.  He is still not so thrilled with the no hair thing.  The other day I was scrapbooking some pictures of him and he said those are his most favorite pictures of him.  When I asked him why he replied, (in a semi-yelling angry voice), "because I have hair in them!  I hate this new haircut and am ready for it to come back!"  We still can't get it through his head that it will grow back eventually, just not for a few more months.  Here is the before and after...(the before picture was taken in February, so two months before he was diagnosed)

hospital pictures

A few pictures from our clinic days...  Thank goodness for video games!   It passes the time much more quickly.  This last one was right after he had his port accessed--trying to be so brave!

CHAMPION

It is amazing how we are able to poke and prod, and eventually these sick little kids become accustomed to it...the shots and the back pokes and the medicine and feeling yucky all the time. Jake had to get his two PEG shots this week. No back poke and no iv push meant they did not access his port--just those two nasty shots. He was such a champ! Especially since the last two weeks have not gone so well when they have accessed his port. He cried for a minute, and had his typical ranting about how he hates everyone (which I cannot blame him), but it literally only lasted less than a minute. He really is starting to be 'conditioned' to expect the things that go on in the clinic. Which is good, but at the same time kind of sad. I know we have said it before, but no kid deserves to have to go through this! It is one of the most difficult trials I can imagine a five year old to have to deal with. That being said, we are already able to see how much stronger it is making him become. He is truly becoming a better person because of it, along with those around him. He is such a brave and strong boy... we know that we are all given trials that we can't not handle which is humbling in and of itself. They teach us so much and to overcome this adversity at such a young age is truly amazing. He really is a champion...so strong!!!

Brothers

I just found this and had to share!  Love love this picture of our boys...don't really know why, maybe it has something to do with the fact that they are all being completely themselves and are actually getting along at the moment!  They are brothers and apparently boys love to wrestle and fight...being a girl, I don't think I'll ever quite understand (the wrestling I mean)...

party time!!

What a week!  We have been so busy starting on Monday...the boys went to Rylie's birthday party.  They had rented a big blowup obstacle course and swam and the highlight of the night was the clown!  The boys LOVED getting their faces painted.  Jake was spiderman and Cole was a white  tiger.  As soon as we got home, they wanted to run around the neighborhood and show all of their friends...the next morning  they were extremely disappointed when I told them they had to take it off!

Tuesday was of course clinic day.  Jeff was out of town and missed it for the first time...lucky guy!  These days are just exhausting.  You leave the hospital and feel like you could sleep for hours on end.  Jakers had to have a back poke today, so again no food until 2:30.  Let me emphasize how well Jake does without food in the mornings...ever since he was just little little--it was his largest and favorite meal of the day.   He LOVES breakfast.  It is his favorite food and we are all meanies for withholding it from him each week.  Needless to say, I was yelled at a few times, but I have to admit that he really did so so well this morning.  He was amazing at the clinic too.  I think the nurse only got kicked once this week after she accessed his port and missed it by 1/4 of an inch.  They had to wiggle it around once again on the poor child.  The good news is that his spinal tap came back clean!  No white blood cells to be found!  It is so nerve wracking every week to wonder if something has gone wrong, or if the cancer has decided to make another appearance.  Every day we feel so blessed that Jake is getting stronger and healthier.  There are so many other children that have it off so much worse than we do.  We often wonder why we have been so blessed in this aspect of this trial.  He is such a strong and amazing little boy.  He has taught us so much these last couple of months.  

The other good news is that our doctor has given permission for Jake to start doing more things in public.  We still have to be so careful, but he was able to go to his preschool graduation this week!  He had not seen his class or his teacher since before he was diagnosed and was so excited to go.  Love love his teacher!  She was so cute with him and carried him across the stage to get his diploma as it is still difficult for him to walk.  All three of these boys are amazing and teach us something new everyday.  We are constantly amazed at how strong they are.  This experience has truly opened our eyes to how much our children can teach us.  They are amazing in every sense of the way!

 

Little livi update

 We put their blog on our friends list to the right of this post under Little Livi.  I think it's o.k. for people to check it out.

Little Livi

Now that we are part of our new "club", we have met so many wonderful families and kids going through, basically, the same things we are.  We talked on the phone the other day with a family from Vegas and their daughter was found to be in remission a week or so ago.  Anyhow, Friday night she was having some abdominal pain and went to the hospital and has had a rough couple of days.  She has been put on life support and we just wanted to ask people to keep this little girl and her family in your prayers.  We don't know them well enough to know if we can put their blog site here but she is a cute little 4-yr old girl who was diagnosed about 3 weeks after Jake.  

It's hard because once you get diagnosed with leukemia, you suddenly realize that the worst can happen.  When people ask us how Jake is doing I always take a deep breath before I answer because I know that any minute something can happen.  You always hope for the best but in the back of your mind you know what it feels like to be blind-sided.  

It's interesting because all we've done is talked to this family but we feel like the closest friends since we can relate so well with their experiences.  We sure are thinking of Little Livi and her family and are hoping for the best.  Like all kids with this awful disease she is a fighter.

Bringin' Sexy BACK!!!!!!!!

So, a few months ago Crew was pretending he was in high school and decided to pull an all-nighter. I remember my last all-nighter. It was at Ben Ashton's house my junior year of high school. It was a Friday night and we played Risk all night. I got second because Scott Perucca somehow beat me. It was a major upset in our Risk playing days. I had basketball practice the next morning at 7!!! Luckily, I'm a warrior and was able to get second at risk and still make it to practice. Anyhow, (I can't use "well" anymore because Heidi says I use it way too often...I think her lovely friend Kristin pointed it out!!) I was up and saw a commercial for this fitness/work-out thing. It was p90x. I was enthralled. I'm not much of an informercial guy, but I was totally hooked. So, (another word Heidi says I use a lot) yesteday I was talking to my brother who just moved to Detroit to start his residency...he just graduated from med school and is going to be an orthopedic surgeon...hopefully he can finally figure out what's wrong with my knee, and he was telling me about one of the doc's he worked with and how buff he had gotten in the last few months and it was because of p90x. The doc told him he hadn't seen the CEO of the hospital where he worked for a few months and then when he did, the guy was ripped. A few of my friends started preparing for a marathon or running or hiring a personal trainer so he could bring sexy back!!! I decided to buy "the X" as I think I'll call it. Heidi doesn't know, but I guess she will tomorrow when she reads this. (Yes, she is at her 2nd girls weekend in a row. I agree, she did a marvelous job in the marriage department!) I would put some "before" pictures on, but I'm not going to do that until I have the "after" pictures done! I'll let you know how it goes.

update

Just thought I would give a quick little update. Yesterday was our clinic day. It was at 12 and Jake was scheduled to get another spinal tap at 1 so he couldn't eat. He really enjoyed that! When they tried to access his port at the hospital, they couldn't get any blood to come back out. He really enjoyed having them move the needle around in his port for about 10 minutes!! He screamed the entire time. I don't blame him, the needle is pretty big and they kept pulling it and moving it around. They finally gave him some medicine that cleaned the port out, basically, and about an hour later they got it working. We finally went in at 2 for the spinal tap and that went really well. He got his raspberry and cream cheese danish from Kneaders so he was happy! There was not an increase of white blood cells like last week and all of his levels look really good.
Since yesterday was Jake's "special day" he and I were going to have a camp-out in our backyard. (Cole's in Vegas with Heidi's mom). It rained last night so we built a fort in our front room and camped out there. We told each other super-hero stories and didn't fall asleep until after 10 (don't tell Heidi!!)
We also talked with a gal from Vegas who's daughter is going through the same thing Jakers is. She is also doing really well and responding great to the chemo. It's amazing how these little kids can have their bodies and lives turned upside down and still do so well. Jake and this other little girl have such great spirits and truly know what they are going through. Jake has been so sweet lately and, although he HATES Tuesdays, has done such a good job going to the hospital and taking his medicine. We just feel so grateful at how our little family is continually being blessed. Again, thanks for all the support.