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

Back to the Pokie

Hi Everyone,


So today I had to go back to the pokie place.  Mommy and Daddy were so proud of me.  I didn't get upset as we drove back even though I knew where we were going.  I will say though that I was pretty sad when I got there.  I found out that my room now has another little kid in it.  My room is now 659A.  I have a buddy in my room.  I think it will be nice to have a playmate but I really, really....really miss my window.  Mommy's pulling every string she can think of to get my window back even if I'm not in the same room.  Maybe she needs to put on that football gear she used to get me out of here again.


Speaking of the hospital, do you know my daddy sleeps with me at the hospital?  He actually sleeps in my bed with me.  He's been saying that his back has been hurting and Mamas and I think it's because he's sleeping with me.  I know you all ask what you can bring for us.  If any of you think  of you some of those warming things that you stick on your back might help my Dah Dah's.


So, about my day today.  Well, that yucky rash is back!  I wasn't expecting to have that present come back.  I have it on my "ammo" area, on my legs and on my arm.  It itches really bad.  Mommy is concerned that my skin is going to start to burn once this Chemo starts coming out of me.


Okay, so I'm going to give you a little medical lesson to make it easier to follow along with me.


As you know I have AML4 which is a very aggressive form of Leukemia.  With this type of cancer "remission" is not really what people think remission is.  There are three different levels which are M1, M2 and M3.  The M level is determined by my bone marrow test.  Remission for this type of cancer doesn't mean the cancer is all gone rather it rates a % of the cancer still in me.


M3 means: 25% up to 100% of the cancer is still in my body.


M2 means: 5% to 25% of the cancer is still in my body.


M1 means: 0% to 4% of the cancer is still in my body.


So guess where I'm at?  I'm an M1 right now!  I still have cancer in my bone marrow but M1?  We'll take that!  Okay, another little happy dance goes here.


As for this round of Chemo.  I'll be have six high doses (it combines three types of chemo) of chemo daily.  My ACN has to be at a minimum of 750 with no fevers for me to be released to come home again for a few days.  They are expecting my stay this time to be four weeks.  Again, this doesn't mean I'm going home in a month.  Cancer doesn't like to be scheduled but it is a ballpark.


The last thing is a song that Mommy wanted to share.



Okay, well I'm sleepy now so I'm going to go to bed.


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

I have a surprise.....

 Guess What?

I'm HOME!!!!

I'll tell everyone all about it tonight but I just couldn't wait to let you know!

Love,

Noah

Monday

Hi Everyone!

So, guess what happened this morning?

Mamas, Daddy and I got the best news.....
Looks like I'm doing so great that I'll get to come home in two or three days!
Can you believe that?

The doctors even say that they think I might be in remission too!

Okay, it's time to get up and do another happy dance!  Doesn't matter where you are.  I think we need to come up with a theme song for my happy dance.  I know some of you are really great with music!

The one downside is that I'll be doing more chemo.  Bleh!  I'll start another round of chemo on Thursday or Friday.

So that's it for now but man...What a Monday so far!

Love,

Noah

It's A God Thing

Hi Everyone~


Sorry I haven't written since the big downhill slide this week.  But man oh man, what changes happen in just a few days.  Got your seat belts?  The roller coaster is speeding up the next hill!


So, we last left off with my ACN at 280, a big yucky rash all over my body that made it hurt to touch me and itched really bad.  Lots of really bad diapers and I didn't want Mamas or Dah Dahs to touch me because it hurt so bad.  Last but not least I was taken to ICU and had a yucky, yucky tube shoved up my nose & down into my lungs so the hospital staff could run some tests.  The hospital staff said that I had Pneumonia...multiple times.  People started think that they might be saying goodbye to me very soon.  I'm going to stop right there because I want you to see some of what I see as God's will and His big beautiful hand in all of this.


As much as everyone wants me to get better, God's will may be to take away my sickies by taking me to heaven.  But....for now God is doing a lot of really cool things from my room!!!  He's made some divine appointments and made another mommy realize on a new level the value of her family and her words to her family.  Others are talking to God more and still others are coming back to Him after walking away for awhile.


Then there was a miracle!  You know that yucky tube I talked about earlier & the hospital staff saying that I had Pneumonia when they took me down to ICU?  Well, people prayed really hard and you know what?  God proved them wrong!  No Pneumonia for Mr. Mans!!!  The hospital staff said they didn't understand how the test results could come back with no Pneumonia.  Do you know what my Mommy said?  "It's a God thing"!


AND...


My ACN as of today is 1136.
My fever is only 99 which anyone in the medical field knows that 99 really isn't a fever at all.
My rash?  Well, it is now just a little glossy and almost completely gone.


Now.....


Mommy and Daddy are talking about wearing crazy football gear to tackle the doctors and get me outta here!  I bet Grammy and Popa will even be sporting that black smeary stuff the football players wear.  Matthew is going to play the part of the water boy.  The doctors won't know what hit 'em!  Hee-hee!


Feel free to stop reading and do a little happy dance!  I already did a little jig in my bed.  I learned my cool dance moves for my Daddy. I'm pretty sure I have the coolest Daddy ever.


Okay, onto other fun stuff.


My Mommy works for the Fire Department.  Mommy says that even though we are not blood related they are my family.  Any you know what?  I have the COOLEST family ever!


Recently my Mommy's firefighter brother Eric came and gave me a Local 522 shirt.  It's my favorite.  Today, Engine 14 came to visit me.  As a special present that was just for me they pulled their Engine into the round about that I can see from my room.  My family made sure that I could see the round about because Engine 14 had a special surprise planned for me.  They turned on their lights and siren and went round and round!  I was so excited I cried.  I'm pretty sure when I grow up I want to be a firefighter too.


SEE?  I told you that you'd want your seat belt on.


Well, that's it for now.


As always, thank you for your prayers and loving my family!


We are blessed indeed....


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

Thursday

Hi All,

Well you all know about my procedures that will be done here in just a little bit.  What you don't know is that yesterday was really rough....the last three days have been pretty crappy to be honest.  I would love to give better news but this is cancer and sometimes, there just isn’t good news other than I’m still fighting hard to beat this.

Yesterday at around 4pm my fever went up to 104.3.  Fortunately the doctors were able to act very fast and were able to get my fever down to 102.4 in about an hour.  That was still high but not as dangerously high as it was.  We still don't have any answers to my rash.

The next bit of news is that my ACN is down from the 800's to 280 as of about 9am this morning.  This is not good.  So as of right now, my going home is off the table.  We do not have any idea when I might be able to go home.

If you are on the meal delivery schedule please bring all meals to the hospital.  The address and room number are still the same as before.

We ask, and this is very important…if you have any sickies of any kind or you’ve been around anyone with any sickies please talk to Stacie Evans for your meal delivery.  You can find her on my Mommy and Daddy’s Facebook friends list.  To add her as a friend just say that you know Mommy & Daddy.  You can also email her at NoahMrMans@gmail.com and she can email you her phone number.  If you would like to help with meal deliveries for anyone who might have the sickies please email as well for Stacie to contact you.

If you are feeling great then it would be great to have visitors.  This is also really important, please wash hands (under nails & up to elbows) before you say hi to me.  There is a bathroom in my room that you can use or you can use the main one in the hospital.  When you come in, there is a sanitizer station on my left wall for you to grab some and rub it in after you’ve washed up.  I love visitors but my body doesn’t have enough strength to fight off everything that might be brought in.

That’s all I have for now.  I’ll try to tell you guys more tonight after they finish all of my tests today.

Love,

Noah

Roller coaster

Hi Everyone,

Seems everyone loves a good roller coaster.  They climb and climb and CLIMB and then suddenly you round and corner and blamo, down a big drop you roar.  If you're really brave you stick your hands up in the air and most everyone screams.  Some in delight and some in fear.

Well that sums up today, Wednesday Roller Coaster Day.  I'm on the blamo part today and I'm not screaming out of joy.  I ended up with a rash, an upset tummy and a fever late yesterday and I still have it today.  Doctors & nurses think the rash is viral.  The doctors just told my mommy, daddy and me that I have to have three, yep three procedures done tomorrow.  I will be having another MRI, Bone Marrow Biopsy, and a Spinal Tap. 

Tomorrow is Thursday.  I was supposed to be able to go home tomorrow.  I'm not happy nor is the rest of my family.  It's up in the air if I'll be able to go home tomorrow.  I have a bit of the cranks....I'm trying to be good but I just want to go home.

Thank you all for loving me and my family.  Sorry that I don't have better news but sometimes in Cancer Land the roller coaster is the thing to avoid.

Love,

Noah 

Things to look forward to

Like days of the week....

Thursday to be specific...

I'M GOING HOME!!!

My ACN is 806 as of just a few minutes ago!

To everyone who has signed up to bring meals please note that as of Friday (Thursday will be confirmed shortly) meals will be delivered to Carrie & Ryan's house.  If you need the address please email at the link below and we will email it to you.

In the mean time, they are still very actively looking for a place to move to.  Noah will be going home to their apartment that they are moving out of.  Please emailNoahMrMans@gmail.com and let us know if you will be able to help with moving in any way (from packing before the move to the move day).

Love,

Noah

Escape Plan

Good Morning Everyone,

Do you know what today is?  Not Monday, the date?!  Well, today is the 15th.  Do you remember when I said that I might get to go home on the 15th?

I wish I could say that I get to go home today, sleep in my own bed, cuddle with Mommy and Daddy at home & play with my brother but....it should be soon.  As in this week!

The doctors need my ANC count to be 500 for me to go home.  I've really struggled with this but, we got the best news late last night.  My count is....wait for it....200!  I'm about half way there!  I'm doing my best to get that 500 the doctors and nurses say that I need.  Mommy says that my goal is to have that count this week.

That's all I have right now but that's pretty big news if I do say so myself.

Thank you for all of your love and support of me and my family!

Love,

Noah

Thursday Thoughts

Hi Everyone,

Sorry I haven't updated a whole lot this week.  I always want to try and tell you all something new but sometimes...well sometimes there just isn't anything new.

Everyone needs me to eat and gain weight so that if I do have to do more chemo my body can handle it.  I'm still loving mini whole wheat bagels with extra cream cheese, strawberries, Strawberries Wild from Jamba Juice.  My Mamas is so funny.  She spells out J-A-M-B-A to her friends but I don't think she knows that I'm catching on to that meaning Jamba Juice!  The hospital likes to give me mac-n-cheese...A LOT!  I'm not a fan of mac-n-cheese though.  They give that to me a lot here since it has all those calories they want me to take in.

Let's see, as for my health, well I might have to have an ultrasound done on my hip because I have a cyst again.  The doctors told Mommy and Daddy that if it's filled with fluid they will have to do another surgery.

As for walking, I'm still not walking a lot because it hurts so I still need some prayer for that. But....I did do more walking today.  And for something new I threw in dancing with my Mamas and push ups with the Dah Dahs!

Right now we don't know if I'm going to be released on the 15th and right now we're told we won't know until the 15th if I'm going to be released.

On that note, we don't have a place yet to move to soplease pray for that.  Mommy and Daddy really don't want me to come back to where we are living now.

Okay, so just a few last things.  Mommy wanted me to share a song that has been on her heart today so that link will be right here...

http://www.youtube.com/watch?v=lLYnN3rRC1Q

My friend Stacie who introduced me to the extra cream cheese bagel goodness also wanted to share a song and that is right here...
http://www.youtube.com/watch?v=NWfZbmGCork&feature=related

And while we're at it here's a song from me.  

http://www.youtube.com/watch?v=0GBhKryJhv0&feature=related


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

Noah

PS.  Mommy just told me that I'm having a blood test at 4am tomorrow morning (Friday).  The are testing my blood counts to see if I am going to need a Platelet and/or Hemoglobin transfusion.  I know it's late but please be praying that my numbers are good.  Not needing a transfusion is the track we want to be on.  Mommy also said that they are going to be testing my Thyroid to see if I have any sort of thyroid condition.

This is another song Mommy wanted to share...

http://www.youtube.com/watch?v=ePuYCbxa8cg

PayPal

Did you know my Mama's and Daddy are rockstars?  The PayPal deal has not been an easy one to fix but they think they have it fixed now.  So, below is a link to my PayPal account.  We will be monitoring this closely over the new few days to see if anyone tries to donate so we know if it is going though or still needing to be verified.

Thank you for your patience on this but hopefully this did the trick.

https://www.paypal.com/cgi-bin/webscr?cmd=_donations&business=3QT9K2HP653HW&lc=US&item_name=Noah%27s%20Fund¤cy_code=USD&bn=PP%2dDonationsBF%3abtn_donateCC_LG%2egif%3aNonHosted

Saturday Shave

Hi Everyone,

Did you know that I've only had my hair cut once?  Mamas says that I'm pretty attached to my hair.  

The doctors and the nurses have told me that my hair is going to go bye-bye for awhile.  Mommy and Daddy have told me too.  Even with everyone telling me that my hair was going to go away for awhile I still didn't really believe it.

It all started with my neighbor coming over and saying that they had just had their head shaved.  He's my friend who had a biopsy the same day as me.  His aunt came in with a thing that she said would tickle and you know what?  It did tickle.  She played with it on my arm to get me used to the buzzing sound and then she pretended that it was an airplane.  Next thing I know the airplane is having a hard time taking off and it took off some of my hair instead.  I was not happy.

I like my hair and I don't really like that it is gone.  Mommy and Daddy say that it will grow back and for now it will feel better not to have it falling out and tickling my face.

Mommy and Daddy were really brave and I was being brave too.  Matthew was there and he started to cry.  He hadn't cried all night until they started cutting my hair.  I think he cried for all three of us.

Love,

Mr. Mans

PS. I have a video of tonight.  I can't get it on here so please see my Mommy and Daddy's Facebook wall for the video.  If you are unable to see the video you can send a friend request to Mommy and Daddy's friend Stacie Evans (just say you are a friend of Mommy & Daddy) and you can see the video there on her page.