My Amazing Life
Mia or Blake,
Whichever one of you
Is growing now
In mommy’s belly
I am sorry I will not see you on
Earth but know I will love you always
from heaven and watch over you
Give extra hugs and kisses
to Mommy and Daddy for me!
your big brother, Mason
My parents are not happy with the idea that I will be sick for a while and that we now will be in the hospital for about 42 weeks this year. Since I am not too picky and I like to watch everything, being up on the 5th floor at WOLFSON is going to be entertaining. I have many little friends with the same kind of problem up here with me. Their families are like mommy and daddy, worried and very sad. See I am only four months old and I don't know exactly what is happening to me so it is probably better.
I do hate the oxygen thing that is in my noise all the time. It is annoying, yet Aunt Abby says its a good way to keep in my pacifier. I have been really bloated due to the fluid and infection in my little body. It hurts when mommy and daddy hold me because my skin is so sensitive. I hear that I will have to have blood transfusions on a regular basis for years. Also the doctors said something about Platelets. I hope people donate blood and platelets for me! Not just for me, but my new friends on the 5th floor as well.
I hear that everyone wants to know what they can do for me and my family. Well here are a few things:
1. Pray for my parents. They are Very Strong people, but they don't like to see me sick and in the hospital. They are having a hard time holding me and they have to sit next to my bed to read and play with me.
2. Can you pray for the rest of my family. My aunts and uncles are all coming to visit and play with me. I need everyone to be strong for me... because I AM STRONG!
3. Can you please donate Blood and Platelets. It will help me out and also help my friends here on the 5th floor. We all need blood.
4. My parents both have to go back to work to help pay for my recovery and all the fun dates I get to have with the good looking nurses up here! Please pray they can handle leaving me! My new apartment on Wolfsons 5th floor daddy says is going to be quite the price tag.
5. Lastly, right now, I just need everyone to be strong for me. I am a Norvell, which means my little body is very, very strong.... not to brag a little good looking too. :) I will overcome this infection in my little body and very soon be playing with your kids again.
Its been a long week!
Well this week as been a roller coaster ride! My Aunt Abby, Mommy and Nana have put on a puppet show for me in my room. It was so good we are charging $5 a person next time. My Friends on the 5th floor can come for free though.
Everyone keeps coming by to visit me too! My Aunt Chrissy is moving up here this week to help out too! She said she would trade in the beaches of Hawaii any day for me, plus she says that I am better looking than any Hawaiian boy she meet out there! Besides playing with me, she will be the official Duce Nanny. (Duce is my big black, 90 pound American bulldog) Duce cannot come see me quite yet. I don't think the doctors would like that, but knowing my Aunt Chrissy... she will try to sneak him in to visit me.
We had some really good news too! :) I lost some centimeters in my swollen belly! Some people might be jealous that I was able to lose some inches so quickly, but I don't like my belly being so big, so I stick to the jello and Mommy's milk. The milk is really good for me! Plus this just “mommy and Mason time”.
Also I had a brain scan and spinal test done. The cancer has not spread to either area... so I will still be able to be really smart when I get older! I hear that the blood banks are filling up with blood donations for me! Thank you!! :) I heard that Uncle Ree got treated like a king when he went in to donate platelets. They let him sit in a spa chair with the TV remote, juice, popcorn, cookies and nurses waiting on him! When I get better I am going to do the same thing.
Tonight everyone is coming to visit. I get to have my first surgery this afternoon. They are putting in a port so I don't have to get poked so much. It is for my chemotherapy. Situ is bringing treats for the nurses... you see, I make her do all the cooking and baking for my girlfriends...I tell them they are from me and it makes me look better.
Oh Yeah, my belly is still going down slowly! I didn't have to wear the oxygen thing as much over the past few days. Mommy and Daddy have been able to hold me a little bit more. They had to go to educational classes this week and all the big words are really confusing so everyone is studying about what the doctors said. I can not even mention about the names of the medicine I get to take... it better at least taste good. I know Daddy use to love to drink the pink bubble gum stuff, I hope I get to take that! Mommy is starting work on Monday, and Daddy is having to go back soon too. I will be sad, but I will have so many people to play with that time will go by fast while they are at work.
It has only been a week... but we are all getting adjusted to my new friends, and my new room. Please continue to pray for me and all of my family. We need everyone to stay strong for us.
Busy at the moment.. but I have something to say anywayI have so much to tell everyone about today, but I am a little tied up at the moment with the chemo drip in my little body, but I wanted to answer some quick questions my mommy and daddy received in email.
Thank you for your donations of blood/platelets. Please go and donate. Please donate for anyone of my friends with cancer. There are so many little kids like me, and my new friends on the 5th floor at Wolfsons, that we can all use your blood. My mommy, daddy and I had a big talk this morning... BIG TALK... and we want everyone who reads this, everyone who can, to donate blood/platelets to someone else in your own community. You are helping us and helping others... so it is a double blessing. Some people do not live here in Jacksonville, but I assure you, there is someone in your own community who could use your blood to save their life. So please, from my little heart to your really big heart, please go today and donate at your local Blood bank.
Ok... More to come after my Chemo!
I have it made!
Thanks for following my story and my progress on KICKIN’ cancer! Yesterday the doctor who is really smart, but talks way over my head (we call him the wizard)... and a little over my mommy and daddy's head gave us some news. Here it is: I am only 1 out of about 50 infants in the world with this disease. Can you believe that I am that rare? But everyone continues to tell me, "well Mason, if you were going to have cancer, of coarse you were not going to just have any old cancer, but you were going to be one in a billion!" I took the news well... my mommy and daddy... lets just say we had to have another LONG talk about how hard I was going to have to fight. But I assured them after my check-up that I was going to be just fine.
I got baptized with everyone there. It was so fun! The whole family got to celebrate together even if it was in a hospital room!
The doctors told us that I was right on track. Not ahead, but not behind. As my aunt Chrissy always says... "slow and steady always wins" So I think I might do it that way. Today my swelling went down about 4 inches total! I look so much better and boy do I feel better!
I got a second round of Chemo this afternoon. Aunt Abby, Nana, Uncle Ree, mommy and daddy all took me for a walk around the floor today. Well my girlfriends chased us down...we forgot the oxygen thingy! I am still breathing... but I guess it was important. So now I get to pull a little oxygen tank behind me when I want to leave WoodPecker Park (that's my neighborhood on the 5th floor).
Daddy meet some new kids today. He was trying to get into the kid game room. (you see it has computers, xbox's, big screen tvs..all for the kids on the 5th floor) Well my new friend... he gave daddy the 5th degree asking why he wanted the code to get in and asking him what he wanted in there! You should have seen my daddy's response! But hey: we kids have to keep Kid Adults out of our special area up here!
Mommy and Daddy had some friends come to visit me today. Only 3 out of the 4 of them made it because one of them got a little too white while giving blood for me... so they had to leave him with my little friend Bruni. I hope this is not happening to other men! I will make sure you are all treated more like kings next time... maybe that will help? I mean how hard can giving blood really be?
I am missing Duce and my regular bed, but slowly I am adjusting to my new hospital crib in my apartment on floor 5 and my million dollar view of the river. Daddy says it is the only time we will live on the river, so I better enjoy it for this year! But I just look out and think about the day I will get to swim and jet ski in the river! It will be very soon!
Alright... I have to go to bed. The nurses that come in after mommy and daddy leave are so wonderful. During the day the nurses really don't come to visit.. but after hours... they are all over me! That's how I became so popular without mommy and daddy knowing. :)
Tomorrow is going to be a great day!
Daddy and I day...
Today it's just me and daddy until mommy gets off of work. No milk from the tata's till dinner tonight.
I had a good night sleep and look forward to a fun day with daddy! Another day of chemo at 4, I am starting to get use to this kind of candy. Mommy is back to work today so i will miss her until she comes after school. She will be really excited as I got a bath today and new clean bandages. I cried (just for attention) when I was getting a bath today from the cute nurse Kat. I am starting to recognize her so I know when she comes in to turn down the lower lip and fake cry a little.
Today daddy and I watched a lot of sports center. Daddy and I are putting our fantasy team together. I think we will win it all this year! Aunt Chrissy came by today and stayed with me to give dad a little break. She can't read very well (daddy says) and she made some alarm go off. Daddy had to come in and call the nurse! She said it was no big deal... I was still breathing!
Things are great right now except dad put on my diaper backwards earlier. And then when he went to put it on right i took a pee all over the place HAHA! I had to let him know I was still in control! Daddy was nice enough to bring my swing up here so now I’m rockin out in the lamb! I just got shot up with some platelets. so thank you to all that donate!!
The doctor came in today and let us know that things are looking up. It will be a long road, but I am on track to be a regular kid. We requested our room back when we come back from being home. Daddy still says this is the only time I will live on the river...so we need to keep our million dollar view!
Thanks for everyone who is donating blood and platelets. I am making new friends still on Woodpecker Park.
I turned 143 days old today!Oh Boy has a lot happened in the last few days! Well I turned 143 days old today. I can’t believe I have done some much in my small time for being alive! Today I was so cranky and tired because so much has gone on… and well I am drugged up!
So mommy went back to work as of Monday. I miss her a lot! Daddy and I are spending a ton of time together until mommy finally gets here to releave me (not daddy) of his craziness!! Daddy has decided that both of us are getting a job down at the “Bow”. You see, the “Bow” is actually called the “Rainbow cafeteria” at the hospital. Daddy said since we are spending so much time here that we might as well start making some money to pay for the million dollar view I have of the river out my window. He said he was going to be the ‘burger flipping king’ and I was going to pass out straws. We have put in our application, so we are waiting to be interviewed at the moment.
Aunt Abby came to visit the other day, it was so nice to have her read to me! While mommy and daddy were gone all kinds of machines started beeping… but I didn’t freak out. I was still breathing so things were all good. At least Aunt Abby didn’t un-do a wire while holding me, like Aunt Chrissy always does. I was really scared when Aunt Chrissy was holding me the other day because I was getting a full blood transfusion and if she had pulled that wire out…we would be swimming in the red sea! But she kept holding me with some “slack” as she calls it with the wires in hand. Now that I think about it… it just might have been your blood that was in that bag… so thank you so much for donating! My platelets too…. I am getting those as well. They keep feeding me all kinds of candy… something called Tylenol, benadryl, and steroids. The candy lady is really cute so I like when she comes in to visit.
The docs say I’m right on track still so I’m hoping to get out of here in about a month. Then a short break at home and back for more. I finally got that oxygen thingy off of my face but I don't know if they will let me keep it off. I get a spinal tap in the morning, so keep praying for me that it comes back negative!
I have not seemed to have many side effects from the chemo. I do spit up some, but I just do that to keep dad on his toes. My favorite lamb swing was down yesterday. I’m definitely not constipated from the chemo! I hate when I do that, but hey, a mans gotta do what a mans gotta do. And it is not hurting my image with the nurses… so what can I say?
So today I am resting. Like I said I was fussy pretty much all night and early this morning. Daddy always has Aunt Chrissy come by (secretly, I think he likes that she is here to help, it means he can finally control her life!) with new blankets, and pacifiers. He always tells her… NO PACIFIERS Vertically…it is funny to hear them squawk at each other. I just sit back, watch, and laugh in my head.
Aunt Chrissy has decided that daddy should pull out the rocking chair to Woodpecker Park Porch and watch all my friends play outside their rooms. That way daddy and I both can rock and talk to the nurses and the neighbors!
The doctors say that I only have about 20 something days left before I can go home for a day or two before returning. Daddy told me today not to be scared when he shows up in a space suit to pick me up. You see, everything has to be clean at home… so daddy has lost his mind in all of this and wants to pick me up in something that looks like the suit from the movie ET. Mommy still has her mind, she says we just have to foam in and foam out. But daddy… he will take me out in a bubble!
This weekend… mommy gets to be here the whole time! We are going to skype with daddy’s friends and the family is going to pick our Fantasy Football Team. Nana is coming to see me tonight!! I just love her and Situ so much! Nana is a nurse, so she understands all those HUGE words that the doctors say… and she can re-attach anything that falls off without calling in the girlfriends of 5W!
Alright, time for me to eat and MAYBE take a little nap. Please pray for me as tomorrow I get to have my spinal tap and get more blood. I am KICKIN’ cancer as best as possible and my mommy and daddy are being as strong as I am. OH yeah, thanks for all the yummy food too that people are dropping off at the nurses desk. I cant wait to try some in just a few weeks when I can eat real food! Please continue to donate blood for me and my friends on the 5th floor. Daddy is still making new friends with the 7 and 13 year olds on 5W… before we know it… my room will be the new “hangout”!
Fresh air please...
Nana came into town to play and stay with me. Well I was really fussy! I was not on my best behavior. Don’t tell anyone this, but I have learned how to work everyone around me. You see, I fake cry until someone walks over. I will act like I am crying, stop to see or hear if anyone is walking over, and if not, I turn it back on! Well Nana, she is starting to catch on! I will have to think of something new…
I didn’t sleep well on Wednesday night, so they gave me so much candy I passed out. The next morning, I had to have a brain scan in something that looked like the starship enterprise. I didn’t wake up until exactly when they took me out… then it was back to making a lot of noise. Mommy and Daddy were probably really tired of it, but hey… this is the only way for me to talk at the moment.
They cut my food supply off at 3am! Due to my spinal tap that was happening on Thursday Morning. Again… it was candy time… passed out I was now in surgery. I scared daddy and mommy when I was in there because it took a lot longer than they told them the surgery would take. Why you ask? Well, I POOPED all over the table! I know it is embarrassing, but what was I suppose to do??? I guess constipation with chemo is not a side effect I am experiencing!
Nana found what she calls the “secret” to get me to stop crying…it was sucrose! She dipped the pacifier in and then gave it to me…. YUMMY! Man, that makes a big difference! So now, every time I cry, you got it… SUGAR time! Everyone thought this was a great idea, until Situ found out… then she began to worry that once I got teeth that I would start getting baby cavities sucking on the sugar… Seems like when I get older I will be trick or treating down south instead of at Situ’s house… she will give me a tooth brush instead of candy!
My Cousins Alyson and Ryan came by to visit today! But when they left… thank god someone figured out what I was saying… I had been crying all day due to a canker sore on the roof of my mouth. Minus the sugar… that thing hurt! So Mommy and Daddy being the best parents they are… gave me some baby oral stuff and BAM.. .I was out like a light!
Today, was a day of ups and downs for me literally and for everyone else emotionally. I started the day off a little bloated! Last night I gained almost 2 inches in my belly, they thought it was just gas, but they wanted to do some tests. So the nice cute nurse took me in… put some cold stuff on my belly and wheeled the probe thingy around… I looked like a little pregnant baby! I was running a little fever, but it was on its way down, which was a good thing! My mouth still has the sore on the top. Today.. I am plain uncomfortable!
This afternoon.. still bloated from what we don’t know yet, we got the news that my spinal tap and brain scan were all clean! YEAH I am KICKIN’ cancer! So Nana and I were playing and guess what happened? The best thing ever!!! Oh yeah…. I let one go!!! OH boy, daddy says it was so loud! Turns out kids… I just needed some BEANO FOR BABIES! Daddy’s new idea to make the money to pay for our view is to come up with beano for babies! My stomach went back down the 2 inches in just a few hours!
SO tonight with everyone there I laughed a little, smiled a little and celebrated my success on my 15th day of kicking cancer, they cried a little too! It was quite a celebration on the 5th floor! Mommy and Daddy just left and I am off to bed. I wanted to write to you all my friends and thank you for praying for me and for my friends here on the 5th floor. My girlfriends are coming in soon so I must go and get ready… no more BEANO needed.
Freedom!! No more wires for me! I now only have the two little clips hanging from my brovak... I might have spelled it wrong, but hey.. I am only a few months old! It is where my chemo and blood transfusions happen everyday. Thank goodness, now mommy and daddy can hold me like normal!
Even though I have been busy playing this weekend in my room with all my family and new friends. I want to tell you from my little heart how much I appreciate everything everyone has done for me, mommy and daddy. It has be a long two weeks, but kicking cancer is a lot of work for everyone! Knowing that all of these people are thinking and praying for me all day long gives my little body so much strength! When I get out of here I am going to make sure I pay all of it forward!!!
OK... Mommy is calling my name... I have to get off of here... DINNER TIME!!!!!
I know its been a few days, but I have been so busy playing and being happy I have not had any time to lay in my crib and type. But today, I have time. This past weekend was a whole lot of fun up here on the 5th floor. Grandpa and Angie, Situ, and Grandpa Bud came to visit along with Nana who was still here. It was playtime all the time!
I was feeling so good the past few days that I no longer have any wire stuck to me! (making everyone happy, and my Aunts not so worried to hold an play with me) I have not had a fever in 3 days and no earaches! I know they say I have cancer, but I can’t tell!!! The only time something goes wrong is the few accidents I had while daddy has been changing my diapers. One time I did pee all over him in front of the doctor. I was a little embarrassed. But hey… cover me up!
Mommy has been able to hangout all weekend! No bottles for me… it was the real thing! I love Mommy so much. She is such a good mommy; she even tried “oragel for babies” so she would know what I was suffering through. I don’t think she liked it that much, she sounded like she was throwing up! I know she misses me while she is at school because I miss her so much too! She started back to school yesterday with a classroom full of little kids, like myself, but older. One day I will be able to go to her class and meet her “school kids” once I get better.
Did I ever tell you, I have the best daddy and mommy in the whole world! Mommy trusts daddy all day with me, which I would trust him too. He is sooo funny! Monday once we found out that all my test were clear, my blood pressure was normal, and there were no blast in my spine or something to that effect (I am sure I have it all backwards) he was ready for my Aunt Chrissy to come by and get babysitting 101, taught by none other than himself.
I wish everyone was there to see it…. Daddy cares so much about me that everything has to be perfect! They looked like two people getting ready to catch a hiked football. Both of them were leaning over me… daddy telling her to get this and make sure you do that, “get the gloves”, “watch the wires”, “hurry get the diaper ready, he will pee”, “don’t tug it too tight, it will cut off his circulations”, “watch the pacifier”, “Oh my gosh! Don’t throw away the diaper”, “your putting too much cream on him”, “its ok… just next time don’t put so much”…. During all this… I just lay there and crack up! Of course instead of letting them know I thought it was so entertaining, I was fake crying just to add to the excitement.
I hear daddy in the bathroom even showing Aunt Chrissy how to wash the bottle correctly! I just watched from my Lamb Swing in awe at how much he must love me to make my Aunt Chrissy practice washing nipples. Maybe he just didn’t want to do it…. But it was funny!
So today, since I was all well and good, mommy was at work and daddy had a friend coming to take him to lunch, Aunt Chrissy and I had our first babysitting day. Daddy was so excited to go to Sonny’s (it’s is favorite) with uncle Bram but before he left, he got everything ready!!! This picture is why he is the BEST DADDY in the world. I watched and smiled at him as he put everything right in order on the bench so I would have the best, and fastest diaper change in history!
After he left, I had my feeding and Aunt Chrissy and I walked the 5th floor and meet everyone! First we were playing Paparazzi, like we always do once daddy leaves. We make videos and take pictures to send to everyone. Today we went to the corner of floor 5 and I watched all the cars go by and I meet a new boy, he is about to be 3. He sort of has what I have, but we played together. He rode his motorcycle around up here. It looked so fun when he kept running into the nurses station. I know I will be doing that in just a few months myself just like my new friend.
When daddy came back my doctors came in and said everything was fine. I was on track as of today. Like I said before… I just want to be on track day by day… I am going to kick cancer, just one day at a time. Situ sent me all kinds of new pictures to put on our wall, so it looks like the Family Hall Of Fame in here! Aunt Chrissy says she is going to add over the bench the picture of “How to prepare for the perfect diaper change” so everyone will know how to do it correctly.
Aunt Abby should be stopping by soon to see me. I love to play with her and uncle Ree. Nana had to leave, but I know she calls the doctors and nurses all the time to get the educated prognosis’s. She understands it all…. Mommy and daddy are learning too, but me… I just think about one thing…. EATING! Oh yeah… No more bean-o for babies either my gas has been gone for a few days now!
Keep praying for me and my mommy and daddy. We are all kicking cancer together!
Bad news today.... we have to move from the Apartment. :( Some construction has to be done near my room and they told us this afternoon we have to move. Daddy is a little upset about this because we are losing our million dollar waterfront property! I hope they are building us a balcony! Tomorrow morning.. I will be living in a new cul-de-sac with new neighbors. Today I got some new furniture. I will have the paparazzi people take pictures tomorrow of the new room and the new furniture that Daddy treated Mommy and I to today! We got a real changing table, we no longer have to use the bench to change my diaper! Maybe next week, we might be getting lawn chairs for the balcony!!!
My girlfriends had to change this week. Some of them left for something called "Vacation". Um... I will have to check into what that is. I hear Mommy and Daddy keep saying they will need "Vacation" after we get out of here...whatever that is? I kind of like it like it is now... I eat... sleep... someone holds me ALL day long... I get a ton of attention here... and I do it over and over again. What is "Vacation"?
I am still getting chemo everyday at 4pm and I get this really nasty candy (meds) in the morning and I dont like it that much. But I will deal with it, because I am super strong! Today I met this little 2 year old girl, her name is J, she is so cool! She has little hair on her head, like me now. You see, I am the black sheep of the floor (I can still pull off a comb-over) But today she told me she was on her last day of Chemo. She said she came in when she was 5 months old too and that I am going to be big like her one day. She is right! She took her own temperature with the ear thing, and one day I am going to be able to do the same. She is my new friend... she told me I could come visit any day I wanted to play. I WILL be seeing her tomorrow. I got a new book from my friend Lilly in Atlanta. I am going to have Daddy read it to me again tomorrow and maybe my new friend J. Daddy needs the practice with the words in the new book... he is sounding like Aunt Chrissy!
I cant wait to grow up some more so I can start eating regular food and mommy's milk. Today Mr. Mike brought daddy Sonny's up to the apartment… and Daddy ate my food too!! No worries... I will pay him back when he changes my diaper tonight. Last night... Aunt Abby and Uncle Ree came by too, and again no one shared the cookies with me! Can someone please sneak me some snacks??? They are all cookie monsters! But Aunt Abby made me this really cool bracelet thing.. i use it to tickle my face when I sleep... it is my favorite thing now.
Before I start dinner, I wanted to thank everyone for donating blood and platelets! Over 400 people have gone out to the Blood banks and donated blood for me!
Well "Bald is beautiful" has to become true this week... the hair is coming out. Now, Nana and Situ can kiss all over my head! Uncle Joe and I will post pictures together next weekend! (he is the bald one in the family)
Continue to pray for me!
We have some funny stories to tell you and some really good news! First, we moved rooms. I didn’t get a balcony in my old room, so they upgraded us to a room with two windows, and a bigger water view. I am in heaven! This new room is a little different, but it is so much brighter. My new furniture, the changing table, fits perfect now!
Second, I get to have a sleepover every night from now on! It is so cool, I love it! The first night, Situ was in town, she stayed the night. She read to me and then she made up her bed right next to mine. It was so much fun, until she walked around looking silly. Daddy said… she is no longer aloud to wear socks with Capri’s. Only behind closes doors is the family rule. Last night, Aunt Abby stayed with me. We might have played a little bit longer than we were suppose to, but hey!, that is what sleepovers are all about, right?
Over the weekend, my blood pressure came down some so I got cut off of some candy. I am happy about that, it was not that good anyway. I still get my morphine drip when I am in pain, Mommy is scared I will be looking on the streets for this stuff when I get older! “ Worrying” is what mommy’s do for us kids. I love her so much! She plays and plays and plays with me all day on the weekends. Oh yeah…. I almost for got to tell you, I sleep now flat on my back! My fat rolls when I was propped up sleeping was rubbing together and it was bothering me. (is that called chaffing?) Now daddy says I get the most expensive rash cream in the world to help heal it. It’s starting to get better.
Mommy and daddy admitted to me this weekend that they are scared I am going to be behind all my little friends like Bruni and Ty in my development, but I keep telling them I am ok in here… but they are making me have tummy time. I don’t really like it that much. My chemo and blood transfusion things are annoying, so I showed them! They put me on my tummy, and BAM I passed out. Fell right asleep. Solved that problem. We haven’t had much tummy time since. I am getting smarter.
My sore in my mouth is going away, slowly, but it is going away. I have gotten very good at fake crying. I like to fake cry until everyone does the “wet noodle” dance for me. It is so funny, they look so funny doing it. I might have to video tape it for you one of these days. The smart doctor, the Wizard, remember the one that talks over ALL of our heads, he came in and talked to mommy and daddy this weekend. We asked him to do the dance. He refused. He had some good news… said I was right were I was suppose to be. Next week I have a test done for bone marrow. We are keeping our fingers crossed that I don’t need it and my spinal tap is sometime this week. But the Wizard, he is going to help fix me. He mentioned that we are going to be like family by the end of my treatment I will be here for so long, but at the end of it, I will be so healthy and strong I will be running down the 5 flights of stairs to get out of here!
So daddy and I started another week of “just the guys”. I thought I was going to show him how stubborn I really could be and not take the bottle. He out witted me, I was feed mommies milk through a huge syringe. I lost that battle. I thought it was candy, but nope… food. Sometimes I just am not that hungry, but they say I have lost some weight, so I need to eat so I can get big and strong. Just like mommy and daddy.
Today daddy and I had a good time waiting on mommy to get here from work. Aunt Chrissy came by to watch me while he went with his friend for lunch… well before she got there daddy told me to squeeze my bottom cheeks together until she was holding me and he was walking out the door to leave. It went perfectly!!!! (daddy and I are so funny when we gang up on her!) Just as planned, she came in all happy to see me, daddy gave her the run down, I started fussing, he said he had to go, handed me over… right when he was at the door saying goodbye…. I let go!!! All over Aunt Chrissy… HIGH FIVE for Daddy and Me! She freaked out… it was the best thing ever! Next we will play that joke on Aunt Abby or Nana.
Daddy came back and we were passed out. So all 3 of us took a nap this afternoon. Aunt Chrissy says there are a few little perks to this new life of ours. Well, mommy is coming soon! She left her kiddo’s at school and is on her way… REAL FOOD and playtime for me!
Thank you to everyone who has donated blood and platelets for me.
I think uncle Ree is coming to sleepover tonight. I hope he tells me jokes before we go to bed. I am telling you…. I like this sleepover idea!
Pray for my friends up here on the 5th floor and pray for me too! OH yeah… I almost forgot to tell you… I meet all the WORLD surfers this weekend. They were up here for the “make a wish” thing… it was so cool. Aunt Chrissy promised to teach me how to surf once I am all better.
Busy on the 5th floor the past few days. I am telling you being a little kid is a lot of work! My waterfront property is still amazing. I see that someone has moved into my old apartment. (there is still no balcony, so that’s ok.) Which I am happy about, because I am telling you apt. # 517 is much nicer.
Daddy has learned that we will not be taking the job at the ‘Bow”. We were denied. Reasons being: I will distract the customers, and they won’t let daddy work for his food. Back to the drawing board for daddy and I! The Bean-O for babies testing lab is currently closed. I have had no more problems with my gas. I have though been able to continue to drop bombs on daddy and Aunt Chrissy all day long! Best part was when we were down for surgery yesterday, daddy and aunt Chrissy came unprepared… so I showed them! I told them to bring a diaper for me, but nope…. Next time, they will listen to this little dude.
Thanks to Aunt Abby I have had someone campout with me every night this week! I love Aunt Abby, she is a teacher like mommy, so making her the schedule coordinator was perfect! I am glad someone has it under control! I am so excited when people campout with me in my room, I try not to sleep. They literally have to crawl around on the floor so I can not see them to get from one side of the room to the other. The things they do to try to trick me!
The past few days, I have wanted just mommy here at night. You see, I have this sore in my mouth and I hate to eat! Unless… it’s the real thing. So mommy, she agreed last night to stay with me the rest of the time, unless I stop being so stubborn and learn to eat another way. But honestly, the free buffet all night long will hopefully help with my weight. So we are going to try it! I made uncle Ree feed me for an hour one night. With Aunt Chrissy, I almost had to break my neck trying not to eat for her! Doesn’t she know that when I press my lips together and lean my head back so far it touches my shoulder blades… I AM NOT EATING! I give her credit though… I hadn’t eaten in a while, so I needed to… but goodness… I didn’t want to, so I DIDN’T.
Daddy was not very happy with me, so he tried to tape a bottle to his chest hoping I would think it was the real thing. HA! Who does he think I am??? I know a Tata when I see one! Gotta love my daddy though… he is trying so hard to get me to eat. On Wednesday he wheeled me around in the “Radio Flyer” so I could visit all my friends on 5W. I want one of those wagons when I get out of here. I can’t wait to pull DUCE around in it. Maybe Duce’s nanny (Aunt Chrissy) will put a cape on him and bring him up here in it! I will suggest that to her today. Do you think they will notice?
While mommy is at school, daddy is earning his MD. He walks around here telling me this and that about some numbers… his daily routine now is to sit in on the “rounds” with all the nurses and doctors. I am telling you, for Christmas, I am getting daddy a white coat so he can fit in! Next, he and I will be practicing the game “Operation”! Oh Boy. Stay tuned for that! But I just have to say: I have the best mommy and daddy in the world!
We got the test results from yesterday. I am still right on track!!!! Besides my eating, everyone is happy with how I am doing. I am pretty tired of the candy and other things that they put in me, but I guess this is how it is, I don’t remember much about what it was like before this. So that must be a good thing. So we have about 1750 more days for me to be right on track and I will have totally KICKED IT! That’s just a drop in the bucket over a whole lifetime! Plus all the time I get to flirt with the nurses and doctors... not too bad. Doctor V is leaving though, so I am a little sad about that, but I hope in my 1750 days she will come visit me.
Well Grandpa Bud is here to play, gotta go…
Labor Day Weekend
Well this weekend was a success for me! Thanks to all my friends and
aunts and uncles who went out to run the race for cancer. Daddy did
not pass out, and I actually heard he did really well. I think he is
going to stick to golfing charity events though. We
watched a ton of football, just me and the "guys". I hope daddy and
mine's fantasy football team does really good this year! It will be my
first time, remember, I am only 5 months old. Situ and grandpa were here this weekend to. I got to see them only two days though. Daddy had them super clean our house to get ready for me to come home! So now, when they say "good to go" daddy can come in with his special suit he is having made to pick me up and take me home for a day or two! I can't wait! I can't wait to see my dog,
Duce. I hear that he is not always good for the "dog nanny".
Sometimes he is a stubborn old man. It runs in the family, so we deal
with it. But i miss Duce, and I know Duce misses me. Aunt Chrissy
says that he goes in my room during the day and takes naps. Soon I
will be able to take a nap with him. As long as he promises to mommy
not to bark and wake me up.
Today I am recovering from all my surgeries. You see, since i am on
Chemo I hate to eat. I think it is a combination of the steroids and
the medicine in my little tummy and I get really sick from it.
Yesterday I ate rice cereal for the first time! It was mixed with
mommy's milk, yummy! I ate the whole thing. But only breast milk
last night, but off of a spoon! so I am learning to be grown up.
Then I decided I didn't want daddy to leave me so I threw up all over
him last night!. I only ruined two of daddy's outfits. No
big deal he said... but oh boy, it went everywhere!!! It was
electric light green!!! I pretty much ruined all my blankets and a few
of my own clothes. My little tummy felt so much better. I am super
hungry so I am happy about getting the feeding tube.
The rest of the day I am going to relax and enjoy my view. Daddy and
mommy are trying to get use to seeing me with a little yellow feeding
tube. I try telling them I can not even feel it, but it is still
really hard for them. I did get my chemo shot while I was dreaming
on the table and they are checking my bone marrow. We are all praying
that I don't have to get bone marrow. I hear it is a hard surgery...
so we are hoping that is a "no go". I am really excited that my
"camp outs" get to start again. Mommy is sad to leave me at night,
but since i have the feeding tub everyone goes back to Aunt Abby's
The 5th floor at night is somewhat out of the movie "night at the
museum". Some crazy things go on here! Continue to pray for me and my
friends. My old friend from the other cul-de-sac has to get a bone
marrow transplant. He told me not to be afraid of my feeding tube
because it has really helped him! So please pray for all of us and
continue to donate blood if you want to help save my life or someone else’s life.
I almost forgot to tell you!!! On Saturday a little five year old boy came to visit me. He told me tobe very strong and keep fighting because when he was my little age, he was in 5W too! He doesn't remember any of it, but he looked at me and
told me to keep fighting so I can be strong and big like him one day.
I took his advise. That is what I am going to keep doing.... keep
Booty Fairy Visits
The worst thing this week: my booty is RAW! I am sorry to be so blunt, but my diaper/chemo rash is horrible! I met the “Booty Fairy” (as I am going to call her) yesterday; she made some concoction that is really helping. Wow, do my two little cheeks feel better! She also created this oatmeal cookie bath for me… I could sit in that all day! It feels so good, and it is as close as I am getting to oatmeal cookies at this point! Then to top off the craziness of this new booty problem, I have to have my two little cheeks blown dry with a homemade Styrofoam cup booty dryer. If you could just see the process of mommy, daddy and I every night they hold me up in the oatmeal cookie bath, mommy kisses my head all over and daddy uses the Styrofoam butt dryer for 30 minutes on me! Maybe one-day daddy and I can invent a “booty dryer for babies”. Mommy just laughs when we talk about it, but how else are we going to pay for our stay in the new apartment? The “Bow” denied our application for employment. So “booty dryer for babies” might be our next million dollar idea!
Mommy’s class is wearing these special bracelets for me. She is going to bring me one so I can wear one too so I don’t miss her so much when she is at school with the other kids. I know she misses me so much while she is there, but she has nothing to worry about, I am holding down the apartment while she is gone. Well, this week, I have totally realized daddy has lost his mind! Let me just paint the picture for you. We have a window, Grandpa bud says its 12x12 on our door. It has blinds on them, that daddy and mommy keep closed all the time. Aunt Chrissy keeps them open all the time, says she likes to see what is happening in the neighborhood. Well, anyway… got the picture in your mind? OK, so Aunt Chrissy and I were rocking out in the rocking chair yesterday, daddy runs in, shuts the door and peaks out the window. Here is the conversation between the two of them. “Mark, what are you doing?” “Waiting for Johnna (the social worker) to get to the nurses desk.” “Why?” “Because Chrissy, when she gets there, I am going to call the desk and ask her to come to the room, so I can open the blinds and scare her!” “Oh my gosh Mark, you must be bored!” Oh daddy, I love him! I want to be like him when I grow up, he makes everything so much fun! There is no need for mommy to worry. Soon we are going to have to make daddy go back to work so mommy and I can have days by ourselves and make jokes about 5W!
Once daddy goes back to work, I guess mommy gets to wear the white coat and get her MD degree too. Daddy, today asked so many questions, I swear I thought he was going to operate on me. We had so many things go weird on us, the feeding tube was in the wrong place, I was throwing up, getting too much food, then my electrolytes were down, then too much fluid I was swelling up, the feeding tube connector falls out, then my Booty rash… geezzzzzzz . I ruined the lamb swing again. Out of commission for the 4th time. I swear, if it isn’t runny bowels like I am 80, then I am blocked up like I ate 5 pounds of cheese! Someone help me!
The physical therapist now comes in to make sure I am growing right. She wants to make sure I am learning to grab things and so forth. All my Aunts say I know how to grab hair just fine! I did christen her today and let out a huge bomb. I hate when I do that, she is so cute, I was so embarrassed! But all the meds that they are giving me to coat my stomach is just not agreeing with me. I don’t know what else to do!?
Yesterday was Oncology Nurse Appreciation day. I snuck out to Publix and got my girlfriends a gift. I am so glad they are here to help me. All of them are so wonderful, even when I fuss and fake cry, they still tell me how wonderful I am. Each one of them works really hard up here on 5W for all of us, so if you see them anywhere, please give them a big “THANK YOU”.
Pretty much this week has been a successful week of KICKIN IT! The 5k for cancer, the results for the spinal tap: clean, the booty rash: under construction, feeding tube: filling my belly, bone marrow test: from 90% DOWN TO only 12%. Praise God! I am starting to lose more of my hair... can you tell? I like looking like Uncle Joe.
Nana and Situ are coming to visit this weekend! Yeah!!! We are all going to play, play, and play! Mommy brought the bumbo seat for me… so I get to practice sitting up! Duce was caught trying to sneak into the hospital. He was bummed, but enjoyed the ride in the car. I miss Duce so much… do you think I should ask daddy to just carry him in here?
Wonder what next week brings?!
The weekend is over, thank goodness! Man, have I put my parents through a lot this weekend! Friday they finally got my feeding tube in the right place and I wanted to eat with mommy instead. Mommy and I enjoyed spending time together, while daddy sat in awe. Sorry daddy, sometimes I just can’t make up my little mind! I do have to thank the “Booty Fairy” , my two little cheeks are looking a whole lot better! The “Booty Hairdryer For Babies” is a hit!
I didn’t get to go home for the few days like we were all hoping for, but that’s ok. I don’t mind staying here. All my friends are here and when my aunts and uncles come and “campout” we probably watch to much tv at night too! At home, I have to follow my regular schedule and rules, but here at 5W… sometimes they let them slide! The doctors told mommy and daddy I get to go home maybe after my next round of chemo. We are all ok with it. This 5th floor waterfront property is pretty sweet! Mommy and I saw dolphins the other day from our window while I was eating. It was really cool!
So right now, we are just waiting on my ANC counts to go up. What ANC means… I have no clue, but mommy and daddy are ALWAYS talking about them. I think they freak out a little bit sometimes because they keep going up and down, and then sometimes the count is at zero. Thank goodness I don’t understand, it would be more for me to worry about. As of now, I will just stick to eating and pooping. You see, everyone is worried that I can tell what all is going on, but really, all I think about is how hungry I am and how everything tastes horrible. So I am just irritated about not enjoying my food! I am a boy, I LOVE TO EAT!
Nana says, I have been a little too puffy because of all the fluids they are giving me. My word, the side effects from this stuff are annoying. I am getting a new sore in my mouth too! But great news my friends.. I am cutting a tooth! I am growing! Even on 5W I am still growing up! Side effects are side effects I guess. They are annoying, but when I am hangin with daddy and mommy and the other family, I forget all about them. This weekend daddy and I worked on the fantasy team, and watched UCF football! It was so cool to have “guy” time with daddy.
So I ended the fun weekend with Nana, mommy and daddy in the PICU. I had to move down here for a few days because I got an infection in my blood, and I started to breathe really weird. Well, the smart doctor, he found fluid in my right lung. So down we went to the original apartment we had on the 3rd floor. The only good thing, I get to see my original girlfriends in Wolfson’s.
We kept saying that we always wanted to go back to the 3rd floor, but now that we are back, I think everyone wants to go back to the 5th floor apartment. MY WORD, lets make up our minds! Pneumonia is not very fun I can tell you that for sure! I have this hug thing on my face, that looks really funny. Mommy and daddy hate seeing it on me, and to tell you the truth, I hate it on me too! It feels so weird, but they say it is helping me breathe. I guess it is, but I just want it off, so tonight, I am going to try my best to breathe on my own and hopefully the fluid will drain from my lung. My belly is now swollen because of all the Leukemia in my liver, so hopefully they can give me chemo soon to kill it! I wanted to come visit the 3rd floor, but I didn’t think I would have to wear this crazy mask looking thing. I need to figure out how to do it differently next time! It is much more quite down here and I really miss my friends. I even miss the boy from next door that made all the noise at night. Tomorrow I am going to try really hard to get better so I can go back up there and start KICKIN IT with 5W again. Once I leave the 3rd floor this time, my girlfriends are just going to have to come up to 5W to see me from now on!
Being a kid in heaven: AMAZING!
Hey Mommy! Hey Daddy! I wanted to let you know, I am great, I am ok! I would call like daddy wants me to, but they have no cell phones in heaven…. But, I have so much to tell you. I know, my short life was heartbreaking at the end for the both of you and many others. But remember: Mommy and Daddy and Mason: Best Friends Forever.
So heaven is soooo COOL! I have to tell you all about it and the people here! First, after I gave daddy my fist in the PICU and he kissed it, I went straight to heaven. I felt no pain mommy and daddy. None… Jesus held me in his arms and told me everything was going to be perfect now. I have no bruises, no wires, and no more tests. Oh yeah, my two little cheeks… they are all healed too!
I can walk now! When I got here I walked up to Jesus gave him my fist, he kissed it and said “Well done good and faithful Child”. Then he gave me my wings and told me to run around and go play! I have meet Grandpa Michael. Mommy he has told me all kinds of stories about you. Says I look just like you too. He told me I get to hangout with him forever now. He told me he was going to watch out for me. He also told me he was going to teach me all kinds of games and tricks. He is soooo cool! Is my middle name after him? If so that is super cool! Jesus has the best playground ever for kids. He says he LOVES children just like that song say Aunt Chrissy use to sing to me at night. So grandpa and I go there all the time. In heaven there is no bed time either… so I pretty much have been playing since I got here. It’s great! Jesus said Duce will come live with me in the kid area when he gets here too. I will have Grandpa walk him, he will still be too big for me I think.
I play soccer all the time like you daddy. I have my own little team. It is like a pee wee league. I am the captain, of course right? Jesus told me you use to be a goal keeper so I am the goal keeper too. I get to go swimming now and play in lakes, go fishing and everything. There are all kinds of people here telling me that they know you mommy and you daddy and how special the two of you are. They tell me all the time I was so lucky to have you two as parents. You know what? I know that… I know mommy that you loved me so much. Same with you daddy… I knew you loved me more than even flying! When I saw Jesus, I said to him… I have one thing to say “thanks for the best mommy and daddy in the world”.
I was there at my celebration party you had for me on Thursday. I saw how sad you were, but mommy and daddy, remember what the priest said… I am in a better place now. Thank you for calling up all my “Girlfriends” and “The Wizard, Dr. Joyce” and blessing them. I wanted them to know how much I loved them. We all know that they tried their hardest to save my little body, but Jesus called me home instead. The nurses and doctors were so nice to me, I know they loved me! I have met a few kids up here that knew the same nurses and doctors. Sometimes we all sit around and tell stories about 5W. Mommy and daddy, please help them and all the other kids on the 5th floor at Wolfson. I know how much everyone hated that I was up there, but it was my home for the last 6 weeks of my amazing life. They became our new family. Thank you for letting them take care of me and thank you for showing them how much we appreciated their hard work. OH yeah, continue to take them cupcakes from Publix every now and then too. Daddy…. The bow is going to miss seeing you everyday for your coffee run. At the church the water spout outside that my aunts and uncles saw… that was me, zooming out of there and picking up Oscar the Octopus on my way back to heaven. Did You know… Octopus’s have 3 hearts? That is why I loved Oscar so much, he had 3 hearts… his mommy’s heart, his daddy’s heart and his heart. It reminded me of the three of us.
Up here, I get to eat all the ice cream in the world until I am sick, but I never get sick! I get to watch all the TV I want… and I never have to go to bed! It is amazing! I miss you too very much, but up here no one is sad. Jesus keeps telling me, when you get up here to hug and kiss me, it will only feel like I have been here a few minutes. I see you are sad, but I will be with you always. I asked Jesus if I could be a big brother, he said he will see what he might be able to do for me. Said we will have to just wait and see what happens.
Daddy if I can tell you anything, just know that when you are up in the clouds flying those big planes you fly, I will be sitting right there on the wings with you. I never got to fly with you before, but now, I get to fly everywhere. You will be the closest to me when you are up there in the big blue sky. I know you will miss watching football with me and teaching me how to be a big boy, but daddy, don’t be sad… I know you loved me so much! Aunt Chrissy use to always tell me how special of a daddy you were. How she had never seen any daddy in the world set up a diaper changing area like you. She use to always get mad that you never left me very long for the lunch breaks. She said you just couldn’t get enough of me. Therefore, I knew daddy, I knew that I was the most important thing in your life. I knew that you didn’t like to see me in the hospital, but you were fighting to make me better. And I know that when you kissed my fist that night in the PICU, you told me it was ok for me to go see Jesus. So daddy, thank you for the best life ever!!
Mommy, know that I will walk the halls everyday at school with you. I know you loved little kids and you love your classroom. I am there too…. When some little kid gives you a big hug, take it, its from me too. And when your kids are really rowdy, know that I am there too… egging them on… me and my attitude! I know what Nana use to say to me all the time… “CHANGE THE SUBJECT”. So just tell them that, and I will know that you know I am there. Share my story with them… teach them how to help other kids like me! Mommy you are so special! When you walk around day and night and you feel the wind on your cheeks, know that is me flying by kissing you. I will miss you so much while I am here without you, but know this, I knew you loved me so much. I knew that I was the most important person in your life. I remember all the fun days we had together when you didn’t have to work and how we would play all day long. I loved when you would feed me. I remember those times mommy. I know it hurt you to see me in the hospital, but I knew you wanted me to get better so we could go home and play. I know you and daddy did everything you could to make me have the best life ever, and you know what, I did, because I had the two best parents any little kid could ask for! Jesus knew he had something really special to do through me in a short amount of time, so he knew that I was going to have to have the best parents possible and that is why he gave me to you and daddy. I love you so much mommy and I am going to hang with Jesus and Grandpa Michael all the time. I am going to let the other little kids up here without parents hangout with us too.
Aunt Abby, Aunt Chrissy, Aunt Lindey, Uncle Ree, Uncle Joe thanks for everything too. Thanks for coming to visit, thanks for letting me watch TV all night long without my parents knowing, thanks for letting me poop all over you, thanks for feeding me real food even though you were scared I was going to be allergic and then we would be caught! But most importantly, thanks for loving me. I know each of you are sad that I am gone, but I know that you loved me so much. I could tell when you would come visit, I always looked forward to it. Don’t be sad, I am in a better place. I just need one thing from you…. Watch out for my parents; help them if they need it.
To Nana, Situ, Angie, Grandpa Mike and Grandpa Bud, thanks for having two great kids that were chosen by Jesus to be my parents. I know you love them so much like they loved me. And I know you love me too! I hope my story, my fight in life is a reflection of how strong my parents are that you raised. You taught them to love because I felt it! Nana, I am going to be in the NICU with you now… I want to teach other babies how to fight like I did! I want to help you help them KICK IT! Like I told mommy and daddy, when all of you feel the wind on your cheeks know that is me flying by giving you a kiss from heaven. I am having a great time in Heaven. I will see all of you before I get to see mommy and daddy. So I will wait! Look for me when you get here… I am running around… I will look like my “angel” picture as daddy calls it, but I will be in a new body.
I love all of you as much as my little heart can love, I am hanging with Jesus now and KICKIN IT FROM HEAVEN!
I love you Mommy and Daddy. Thanks for the most amazing life ever!
If you are reading this story of our sweet Mason, it is no accident.
Mason’s fight for life, his perseverance, his determination to keep kickin cancer was amazing! The pouring of people from around the world praying for this little baby that no one knew was unbelievable. I will tell you, we never would have thought, probably just like you are thinking now as you read this story, “it is sad that this happens to people, but it will hopefully never happen to my family”. How can I say that, because that is what we thought! As the truth is told now, it happened to my family. Many times in my life have I watched stories of children’s hospitals on TV and at the end feel so helpless, not able to breath, sitting crying my eyes out hurting for other families. At the same time, thinking… thank God, that is not my family! Well, all to soon, the family on TV became us. Our life went from what we thought was pretty much perfectly normal with a growing baby Mason who just turned 4 months old, and in a period of a few hours from his 4 month old checkup to the PICU on August 5th. It can happen. What is heartbreaking is, it is happening to a family right now as you read this somewhere. A family just like ours and yours.
It is true, it is real, and it does happen. We wish we could have taken the hit for every family on earth, but we didn’t, today some little kid just got diagnosed with a disease and will not make it. It is so easy to go about everyday in your own routine and forget that stuff like this really happens! Do you know how many times I have passed a hospital, and thought… “oh how sad” and then just go on about my day. And when I passed a children’s hospital I use to think of it as a place for only broken bones, like my experience was as a kid. But the raw truth of it all is that, yes, hospitals are sad, and there are people hurting, but a children’s hospital… it will break your heart. Never did it cross my mind that there were families up there holding on to nothing but a thread! Sitting in rooms praying that they would get good news that their little one is going to make it. I never imagined that there were families like mine who were forced to make a 200 sqft room their new home. That little kids living up there actually though wires, tests, and tubes coming out of their bodies was normal. I watched as kids up on the 5th floor thought that balding was normal and pulling around a pole with a chemo bag was what a normal kid did in life. Yet, the older ones, they knew they were not the “normal kid” but as a family, all you can do is try to tell them over and over again that they are normal. It is sad to see kids come up there everyday fighting for their life, and parents and loved ones holding on to every word that is spoken from a doctor. Holding their breath waiting to hear the words, “your child is going to be ok, we can beat this”, but in some cases, all you hear is what we did, “today your child is on track, we are trying our best”.
The staff at Wolfson Children’s Hospital I believe are angels on earth. Wolfson’s 5th floor is where Mason spent ¼ of his life, and his last 6 weeks with us here on earth. Room 524/517 at Wolfson’s became Masons new home, became our families new home. Was this really our “NEW NORMAL”, we thought? Wolfson’s children’s hospital is not just a hospital, but it is a family. If it was not for Wolfson, Mason probably wouldn’t have lived another week if he did not get the treatment starting that day, his Leukemia was that bad. I personally owe everything to them! When Mason was ten weeks old, I flew home from Hawaii, jet lagged and tired, I saw Mason for about twenty minutes that day. I never took a picture with him because I thought… ah no big deal; I will see him the rest of my life. The second time I saw Mason was on the 5th floor at Wolfson’s. My very first picture with my nephew was with him lying in a hospital baby bed with an oxygen tube in his mouth, too bloated to even hold.
That was my first picture. Thanks to Wolfsons, I was able to even have a picture with him. Because of their hard work, I was able to have 5 weeks with him. Those 5 weeks felt like a year… it is funny how when tragedy happens it seems like time goes by so slow.
Every nurse, every tech, every doctor, every intern we saw, I knew they cared for Mason and our family. I remember they would come in our room in the mornings, just to check up on Mason, some even said they come to see him first before they started their day because he reminded them of why they choose to work there. I use to ask them, “How do you do this? How do you deal with stuff like this all day long? Doesn’t it rip your heart out?” They all responded with, “its hard some days, some days it is very tragic and sad, but we have seen so many miracles, it out ways the tragedy.” To this day, I still don’t see how they do it. At Mason’s Celebration Mass, we asked all of the doctors and nurses to come up front and we said a blessing for them. I wish the world could have seen it. It was amazing! Over 20 doctors and nurses came that had worked with us from Wolfson’s. The received a stand ovation for their hard work and dedication not just to Mason but for every child they have seen and worked with. Yes, our families’ outcome was not the “miracle” but it was not their fault. The Wolfson’s staff did everything, and even more than that to help heal Mason. They fought the fight with us, day and night, day and night, for the 6 weeks we were there. When I watched as each and every one of them walked back to their seats I wished I could have done more for them. I still do. Every minute, every picture and every video I have with Mason is because of Wolfson’s.
On the back of Mason’s “Angel” picture as his parents call it, we handed out at his Celebration mass had a verses on it, and it was meant for the people at Wolfson’s. It is Hebrews 13:2 : Do not forget to entertain strangers, for by doing so, some people have entertained angels without know it. (NIV) Mason was an angel, and when we came to Wolfson’s we were all strangers, they took us in and loved us like family from the very first day we were there.
My passion now is to reach out to other families just like mine and helping Wolfson’s raise awareness about the children’s hospital. I sit now and grieve for the families who fill those rooms at Wolfson’s. The families who feel like there is no hope, not being able to sleep because they worry that their child might not make it through the night. I hurt for the people who do not have the love and support my family is blessed with. My heart bleeds for the little girl who lived next door to us on the 5th floor who was always alone because her mom had to work 2 jobs to pay for her medical bills and there was no one else to come stay with her. I pray and hurt for the family tomorrow who will beginning their “New Normal” at a children’s hospital some where in the world. I pray for the family whose life is perfect today, and maybe next month they find themselves in our families shoes, not knowing what to think and what to do. That is why helping this hospital and other families has become a passion. Because all of this is true, it all happened! When I drive by Wolfson’s now, I no longer think of kids with broken bones, I think of the families who are filling the rooms on each floor thinking that their whole life has come to an end. That’s what I think about now.
When we were at the hospital, I remember we were helpless, and at sometimes hopeless. But in our times of hopelessness, we had to learn to trust God. I write this now and it is hard, it is hard to still believe that this is not a dream, this is our reality. So we take our loss and we will persevere, just like Mason would want us to! Sharing Mason’s story is our only way we know to help fight the disease and make other people aware! We must take this and help other families as well, I believe with as much faith as I can have right now, that God choose our family over other families because he knew we would turn our loss into something more than just a loss, we would turn it into a way to reach and help many others! God knew that when he remained faithful to us as a family, that in return we would kick and fight with him, but in the end, we would allow him to use us to reach others. I will tell you though in our selfishness, we would trade back EVERY ounce of good it has done for others just to have one more minute with Mason alive. I am not sorry to say that, but yes, we are that selfish! We are hurting that bad! Yet, God choose not to let us have one more minute.
People ask sometimes if I am mad at God. My response is, you know what, God answered our prayers… he healed Mason. But that meant taking him home to heaven. It hurts, yes, sometimes I am mad at God, but then in the same moment in time, God will reveal himself and show me how Masons fight for life has inspired someone else, or how this or that about Mason has changed someone forever. The one statement that I have played over and over in my head since the day Mason left us behind is one that a friend said to me at 2am that Tuesday. The exact words were, “Chrissy, as hard as this is, remember, even in this God is working”. I was really mad at first that someone would say this to me as I was crying on the phone to them. But as each passing day has come, this statement is the most precious thing I have to test my faith and make me push forward. Because of that statement, I have chosen to see and focus on the good that has come from our loss. It is a minute by minute choice to choose to turn even the smallest great things into “this is because of Mason”.
I can tell you hundreds of stories that we have received and I have seen with my own eyes about Mason touching peoples lives. Stories of people who went and donated blood for the first time in their life. Some people have chosen to find a children’s hospital in their own town and donate money or even time to families in need. Stories have come in about how parents have shared Masons stories with their children and they have done projects to help other children with cancer or at hospitals. We heard of stories where people have reconnected with family members because they see how important love and family really are. Some have changed their minds on getting a divorce because now they realize what is most important for their own children and how blessed they are to be able to hug their child. The stories could go on forever.
Over 10,000 plus people around the world followed Mason’s story. It was amazing to see how people were pulling together to pray and live on hope that little Mason was going to kick cancer! Myself included, I thought he was going to make it more than anyone! I can honestly tell you, the day Mason went home to heaven, I personally believe people all over the world grieved with our family. So many believe like I did, that God was going to heal him and leave him here with us. God healed him and answered our prayers, just not the way we wanted him to.
If Mason’s life inspired you in some kind of way, please, please, please, from my families hurting heart, find somewhere or someone that you can pay it forward to. Reach out to others in your community, give blood and platelets, its only an hour at most of your time, and you save 3 lives every time you give. Blood can not be processed in a plant somewhere, nor can it be bought with all the money in the world. It is something only that can be used by someone giving it themselves. But please pass it on. Like I said, our family has changed. I have watched how my family now goes and stands at a blood drive and personally stands there for hours shaking the hands of those who came to donate.
We share this story with you, not for you to know what our life was like before, or how sad our life seems now, but because we want you to go do something with it. Take a good look around you, people are hurting everywhere, people need help all around you. We didn’t want to ask for any help at the beginning, but it became too hard for just our family to hold it together, so we were forced to swallow our pride and reach out for others to help us. Some people are not strong enough to ask for help, but they need it, just like we did.
Find a place like Wolfson’s or some type of charity, a place where you can give your time or donations of some sort. I was taught you can never out give God. It’s the truth. I challenge you to try to out give him…see what happens. Please teach your kids to do for other hurting kids! The kids on the 5th floor, they need other kids to come see them, come be their friends, to let them know that they are not alone, even if they have a disease or they are bald. They are all just kids!
Today choose to make a difference in a child’s life!
Thank you for loving Mason,
Christinenorvell@gmail.com if you want to share anything with our family. Thank you for reading his blog!
www.lightthenight.org team Mason Norvell if you want to join our team for Jacksonville's light the night Nov. 3rd, 2011