Asparginase

Hi Everybody,


Did you all have a nice Thanksgiving?  My family sure did....we didn't have to spend it in the Pokie!  We had lots of yummy food, I ran all over the place and I got to see George some more too.


We went back to the Pokie on Friday to get checked in and get ready for what was on the schedule for today.  At around 2:40 a nurse (that I don't wanna see again since she decided to poke me) came in to start the process of giving me my Asparaginase Shot.

*****To all of you who decide to watch the next two video posts below please be prepared before you watch them.  The video posts are raw and emotional...they are not edited to make them easier to watch.  I did my best to give you all everything that Noah went through today.  Stacie******

This video here is my nurse giving me some numbing cream.  It numbs the top layers of my skin.  Then I have to have an ice pack on it for about five minutes.

Next came "Buzzy".  I don't like buzzy....not one bit!  The nurse said that Buzzy would help my muscle expand and confuse the nerves before I get my Asparaginase Shot.

At least after three hours and a nice long nap I was told it was time for us to all say "So long Pokie"!  Just in time to not have to eat the hospital food.

And then, I was outside and heading to one car to head home.  I like riding home in Da dah's truck but it sure is nice to have my whole family in the car with me!

Well, that's all I have for right now.  I have to do another one of those nasty shots soon.  I wonder if I told my Daddy to run fast, fast he could outrun that pesky nurse with that needle?!

Thank you all for continuing to pray for me and my family.

Love, 

Noah

God All Around

Hi Everyone,


Hope you all had a nice weekend!  We had a few different changes here.  So many people turned up to help my Mommy and Daddy with the move.  From cleaning the new house to packing and moving all of our stuff into it, to Grammy staying all day and playing with Matthew and me.  It wouldn't have happened without all of you pitching in!  I'm excited to go to my new house when I'm able to escape the Pokie.


I keep hearing all the great things that my new puppy is learning & that he's really, really smart.  I'm so excited that I was given George and I can't wait to snuggle him!  Have I told you guys the story of George?  My friend Stacie has a friend who breeds Goldendoodles.  They originally though George was sold to someone else but then things happened and they couldn't buy George.  So Stacie talked to MG to see if my getting George was an option.  And what do you know....it was!  Do you all remember when I asked you to pray for my friend Matt who passed away from his cancer fight?  Do you also remember how I said we named George after Matt by using Matt's middle name?  Well here's a God thing.  Matt's Daddy's name is Darryl.  Guess what George's name was before we renamed him?  Darryl!  God is all around.....even is a black fuzzy puppy.


As for me, my ACN bottomed out to zero.  I just have to remember that we don't want the Goose Egg to stay around so my ACN's can climb.  Also, I said goodbye to the Broviac and I now have a PICC Line.  I know a lot of you probably don't know what that is so this link might help. http://picclinenursing.com/picc_why.html.  I also had a platelet and hemoglobin transfusion.


As for other prayer requests for us, we're all under the weather now.  Please pray that my family gets to feeling better very soon.


Love,


Noah

Popsicles, Straight Jackets and a Cookie Toss

 Hi Everybody!

Did everyone have a fun Halloween?  I was able to go trick or treating here in the hospital.  Childlife brought me a Spiderman outfit so I could dress up. Did you know that costumes are like straight jackets?  You didn't?  Neither did anyone else in the Oncology Ward until they tried to put it on me and had to hold onto my wiggley, screaming, crying and not so happy self to get it on. 

 Here's me in my straight....I mean Spidey Suit.

Everyone said I sure looked cute in it but I just wasn't a happy camper.  Daddy asked me if I wanted to be Diaper Boy instead of Spiderman and I said "YES, YES, YES!!!"  This is me trying to turn into Diaper Boy.

And then I thought it was following me!!!  I knew I was safe being on top of Daddy's shoulders but I still had to make sure I kept a close watch on it.

I've been busy the past few days.  I've broke two Broviac Main Line in the past few days.  I've had two IV's as well.  That's what happens when I have lots and lots of energy and an ACN of  over 7000.

But I like things in two's....especially when they are POPSICLES!  Yummo!!!

And cupcakes!

I've had fun playing too.  Here's me with a bucket o' blocks and Mr. Worm.

But with all that fun came some not so fun stuff today.  Tonight I'm on antibiotics and they don't seem very happy inside me.  I wonder if they think my body is a straight jacket too.  I'll have to ask next time they try for a grand escape by way of making me toss my cookies.  I don't have a fever or rash though so I guess throwing up isn't so bad.  The nurse is really nice though and gave me something to help.

Thanks for keeping my family in your prayers and all your support.  We could still use help in the food department.  Right now we have November 4th & 14th with a meal delivery but other than that we don't have anything else.  If you can help it would be appreciated.

Our biggest need right now is for people to help move.  It's very last minute but we are moving on Saturday...yep, this Saturday!  Can you help????  Please, oh please?  Please email us at noahmrmans@gmail.com or comment right here if you can.

Love,

Noah

Back to the Pokie---Take Three

Hi Everybody,


Did you guys all have a nice weekend?  I sure hope you did because I had a blast!  My ACN even went up to 2100!  WHOOPIE!  Hee-hee!  That's a new word I learned from my friend Stacie. Whoopie, isn't it fun?!


My family went to the Home and Garden show on Saturday.  It was so nice to be outside.  You don't realize just how nice it is until you spend a month inside.  

I also got to try an S'more for the first time.  Can you say yummo because I sure can?!  Actually, just let me have at the chocolate.  

I found a new round and round in the dishwasher!  I even gave a lesson on it being high efficiency.  It was fun!!!

I walked a doggie and her name was Sadie...

I ate some frozen yogurt...Yummo! (by the way I LOVE CHOCOLATE!)

I went to jail....

I even played in the kitchen with my Police truck while my Mamas made pastas.

You can't end fun filled time away from the Pokie with out some bouncing on the bed so I did a bit of that too.

I sure hope you all had as much fun as I did!

Today I went back to the Pokie and started round three of my Chemo.  I don't know yet how many days I'm going to have to take the yucky Chemo.  This time I'm in room 645B but I don't know how long I'm going to be in that room so keep following here to get updated on that.

Thank you for all your prayers and support of my family!

Love,

Noah

Help Needed

Happy Sunday Everyone,


I'm sure by know you have seen the posts that are being shared on Facebook regarding Noah's Take Them A Meal food calendar.  We have had a few more post this weekend to help but we really need more help.


If you want to help but maybe you don't have time to deliver meals, maybe you don't have the budget to provide food but you have the time to deliver food, or yet maybe you don't live in the area but want to help.  If you fall into any of these categories we have options.


We humbly request that you please consider how you can help in the area of food.


Please email at NoahMrMans@gmail.com or contact Stacie Evans @ my Facebook page...  https://www.facebook.com/belovedgirl for how to help.  If that link does not work you can find me on Carrie and Ryan's Facebook page as well.


Carrie and Ryan are so grateful for everything each of you have done so far.  They are constantly blown away by your generosity & your support of their family during this time.


Thank you all!


Stacie Evans

Bouncing Buckaroo's

Hi Everyone,


So last night we left off with the day being a really low day for me and my family after hearing my ACN had dropped even further down to 224.


Well this morning when I got up I noticed that my bed was a bit bouncy.  And then, someone brought in a trampoline.  Shhh though because even though no one but me, Mamas and Da Dah's can see my trampoline it's hidden under my bed just to make sure it stays there.  Mommy and Daddy suited up in that football gear I was telling you about, and with that we were ready for my next ACN test.


Guess what it is today?  Remember 500 is what I need to go home.  Got your answer?  Hey you!  Yep you, no peaky peaky at your neighbors answers.


If you guessed 799 then we need to play Bingo together!  Waahoo!!!!  That number right there...that 799...well that's a God thing just so you know!


Mamas and Da Dah's wasted absolutely no time in tackling those doctor's and guess what?  I'M NOT IN THE HOSPITAL!!!!  

This is my reaction when I was told that I get to go home.

See this grin?  I remember what happened last time I was in my car seat...

MOM....I'm going home!!!!

Driven through town just my boy and me...

(Mamas is taking a quick picture of Da Dah's and me driving home)

Fresh out of the truck and about to head upstairs...

Daddy, let's take a peak at the round and rounds; the air conditioning units...

Still climbing my way up the stairs....

Home again home again and inspecting my favorite round and round; my fan...

So, I'll be home until next Tuesday which is 27th.  Tuesday I'll go back to the Pokie and start round three of Chemo.  I have to go back for my Spinal Tap and Bone Marrow Biopsy tomorrow but other than that....I'm outta the Pokie!!!

Mamas is so excited because other than a couple of jobs on Thursday and Friday Da Dah's will be able to be home most of the time and after Friday he'll be able to be home all the time too!

So for everyone bringing meals you'll need to bring them to my house.  If you haven't been here yet you can call/text us or message Stacie (you'll find her on Facebook) and we'll give you directions.

I don't know how much I'll be updating while I'm outta the Pokie so don't be alarmed if the next update is Tuesday.

Love,

Noah

Ways To Say Goodbye....

In French it's...Au revior

In Spanish it's....Adios

In German it's...Servus

And in Italian it's....Arrivederci

And if you're me?

SO LONG POKIE!!!

So guess what I've been asking to do all weekend?  Yep, I want to say so long to the Pokie so bad.  Especially today; I really had a case of the Grouchy Bear.  Playing with the Goose Egg isn't cutting it anymore so I put the Goose Egg away.  Guess what my ACN is now?  Okay, everyone pick a number between Goose Egg and 500.  Five hundred is what I need to say so long Pokie.  Everyone have your number?  Oh, you want a hint???  Okay, your hint is that it has THREE numbers in it!  Ready???

272!!!!

My Mama's and Daddy are so funny and are planning some mischief!  Da Dah's went home tonight to get some rest.  Da Dah's is coming back in the morning though and Mommy and Daddy are going to suit up in all of the football tackle gear they hid under my bed.  Then they're going to tackle the doctor and convince him that it's time for Mr. Man's to go home again.  Mamas really wants me to get released tomorrow but it may be Thursday.  Part of going home is the normal Bone Marrow Biopsy and whatnot.

So if I do get to go home tomorrow then the food deliveries will go to my house instead of the hospital.  For those of you signed up you'll get a phone call to let you know.  Mommy and Daddy are so grateful for the food.  It's a huge help to my family and something they really need to have continue so feel free to sign up.

So, most of you know that my Mommy works for the Fire Department.  Remember back when I told you I thought Christmas had come early with all the fun presents I had given to me?  Well, Christmas came early for my Mamas too.  She was told that instead of having to come back to work right away she can stay off work until January!  Can you believe that?  Mamas wants to be able to stay until November and then she thinks that she will try to get back to work.

We've told you many ways you can help our family & then you've come up with so many on your own as well.  This is another way my Fire Fighter Family (Family should have nicknames so I'm going to start calling them the  Triple F's!) can help.  Mamas says that the Triple F's can donate a day to her.  That donated day gives my Mamas one more day to be with me.  It takes a lot of stress away from Mommy & Daddy trying to figure out who can stay with me during the day because they really want one of them to be here with me.  Can you do it Triple F's? Please???

One last thing Mommy wants to share with all of you.  Many of you have been making donations via PayPal and there are many others who are mailing checks to Daddy's work PO Box.  Mommy thinks that they are going to move away from the PayPal account and just ask you all to send checks instead due to how much PayPal keeps of your donations.  You can mail checks to:  PO Box 1627, Folsom, CA 95763.


That's all I have for now so I'm going to say good night.


Love,


Noah

Goose Eggs

Hi Gang,


So yesterday my ACN came back at 54!  That's not a big number but progress is progress and we'll take it!  We thought we were done playing with the pesky goose egg but guess what came back today on my ACN?  Another big ol' fat goose egg.  Everyone is so amazed that even with the 0 for my ACN that I have so much energy.


Mamas and Da Dah's are so happy that I haven't had fevers or rashes and that right now I'm all about playing.  This time is so different from my first round of Chemo.


Mommy has to go back to work soon.  Please pray for my family as the transition to going back to work comes and all that that includes (time with me, care for Matthew, having family time, etc).  Da Dah's has been doing as much work as he can and also be here.  You know those tight rope people they have that walk on that itty bitty rope?  That's my dad.  He's balancing all of this stuff and I don't know how he does it.  I have his genes though so when I grow up and am big and strong like him I'll be able to do it too.


Thank you to the people who signed up to bring food again.  My family can't say enough how big of a gift that is to us.  It's not just the feeding part, it's the visit, the fact that you love my family enough to make or buy something, drive it all the way across town to deliver it and the fact that it is one less thing for Mommy and Daddy to think about.


As always, thank you for loving me and my family.


Love,


Noah

Take Them A Meal

Hi Everyone,


The entire Johnson & Erion family, Krista (she runs the food calendar), the church family who has set up people to come to the hospital to visit each day with Noah, and myself, Stacie (writer of the blog) are absolutely amazed at how you all have come together to love on this family.  You've come to clean house, run errands, offered to help pack & move the Johnson family once they have new housing squared away, you play and hold Matthew, bring toys for Noah & brighten his spirits, you've been a shoulder to Ryan and Carrie and you've brought food...lots and lots of food.


By now you know that Noah's stay in the hospital for this round of Chemo is going to run a few more weeks.  We are coming to the end of when the original calendar was dated out to.  Krista has expanded the Take Them A Meal calendar through Christmas Day.  We are in need of your continued help with the food.  We have a need for food as of this Saturday.


The link to the food calendar is just down below this blog on the lower left hand side.  If you want to know how else you can help Carrie and Ryan please get in contact with me, Stacie.  You can email NoahMrMans@gmail.com or you can find me here on Facebook....


https://www.facebook.com/belovedgirl


Again, thank you so much for everything each and every one of you have done.


Stacie Evans

Another Round of Chemo

Hi Everyone,


Guess what I am!  I'm a chemo pro!  We finished round two of chemo and I didn't have any big issues this time.  I have a lot of energy even though my ACN is only 84 right now.


Anyway, here are a few pictures from the past few days to get everyone caught up.

I'm posing with the fish.  This was taken the last day I was able to play in the playground until I was finished  with chemo this time.

But I wasn't away from the playground for too long.  I'm back and playing with the school bus.  How many of you know "The Wheels On The Bus"?  Tell you what, I'll start at the end of this little bloggy blog and you guys post the next line...just one line though.  That way it will be like all of you guys reading about me will be like you are singing along with me.  Will you do it please?  I'll share my Jamba with you!

I have to tell you guys that I have the best little brother.  He snuggles with me, keeps me company, AND, he shares this....

I must say it's a lot of fun to play with!

Well, that's all I have for now but I'll tell you more again soon.  Thank you to everyone who bring my family food, comes by to say hello, spends time with me and my family, helps my family by running errands, doing laundry for my Mamas and Daddy, those who bring me fun new toys, everyone who reads this and who prays for me and my family.  Everything you all do means everything to my family.  We couldn't do this without all of you.

Love,

Noah

Monday, Monday

Hi Everyone,


You know what?  I think it's funny that everyone says "Bleh, it's MONDAY"!  How can Mondays not be fun when you get to do a bit of this....

My Dah Dah's and Mamas say I'm the coolest BBQ'er in the West!  What do you think?

Then it was on to a bit of fun and games in the form of Bingo...

Do you see what I need so I can yell BINGO!!!  Good, because guess what I got?

Not one, or two, or even three but four...yep, four monster trucks!  This whole Bingo thing is pretty sweet!!!  So who wants to play vroom vroom with me?

Love,

Noah

I Feel Good......

Hi Everybody!

Sooo....today was just the best day!  Mommy and Daddy had the best surprise for me.  "Do you want to go home Noah"?  Of course I do silly!  When they told me that I was going home for two whole days I did this....

Then a few minutes later Dah Dah's picked me up & took me outside the glass doors that I've only looked out for five weeks.  I was so surprised to be outside!  I even yelled OUTSIDE and Cars Daddy! LOOK AT THE CARS!  

I'm still not believing that I'm being carried out by my Daddy until this.....

See!  I've got a hint of a grin here!  This is the best ever but wait.  Here's me the very first time I've been home.  Can you see me???  You couldn't stop me from RACING inside!

So how do you end the best day ever?  Just like this....

So that was my families day.  It doesn't get any better than that!


I'm home for today and tomorrow.  I have to go back to the pokie place on Friday.  I have to start my second round of chemo then.  The good thing though is that this time I won't loose my hair.


Here's our theme song for today!
Walking On Sunshine


Love,
Noah

Thursday Thoughts

Hi Everyone,

So....I had all of my procedures today.  What I didn't know is that I was going to get a surprise dose of chemo.  I wish the surprise had been a visit from Special Agent OSO.

I'm going to tell you my day and just so you know, in case you need to stop reading here, today hasn't been pretty.

Today has been rough...the very roughest since I've been here.  I'm really sick and I don't mean Leukemia sick.  I ate some after all of my procedures but with my being sick and the dose of chemo I threw everything up.  I have had a fever up to 104.9 and the lowest its been is about 102.  I went through 12 diapers in just a few hours and went through three sets of sheets including my blankies in about the same amount of time.  Daddy is staying with me tonight & Mommy went home with Matthew to try and get a little bit of sleep.  I hope they will be able to get some sleep but I know they are scared for me.

I had guests drive a long way to visit me last night but because I've been so sick Mommy had to turn a couple away because of young kids and a couple of others had to wait a long time until I was okay enough to see people.

I don't want anyone to have hurt feelings if you can't come into my room.  I know Mommy and Daddy feel really bad when they can't let everyone in who wants to see me.

Please understand that it's because I'm sick (I don't mean the cancer part) and I don't have enough in me to fight off any sickies that might be brought in.  I know I told you guys this morning about really scrubbing down and then sanitizing before you can touch me.  Mommy and Daddy have to have all of the adults to do this.  Mommy and Daddy can't have any of you who come to visit or bring food bring your children.  Since school is starting kids get sick and pass it around.  So like I said before, if you feel like you have a case of the sickies at all email me (NoahMrMans@gmail.com) or send a friend request on Facebook to Stacie Evans (she'll give you her contact info either on email or on FB) and she will come get the food and bring it to the hospital.

Please pray that Daddy, Mamas, and Matthew get some sleep.

Love,

Noah