Holidays

As I sit here tonight on Halloween thinking about Carlee and Caden it brings tears to my eyes just thinking of Caden and what will the holidays bring. I sit here tonight thinking I wonder what we would of dressed Caden up as.

I went Christmas shopping on Friday by myself, and was shopping for Carlee and Caden. We are going to donate Cadens Toys to Phoenix Children's Hospital in February for his birthday. I went to the section in Target for 6-12month olds and I almost burst into tears thinking that I dont have Caden here with me. I had to think of my friend Kursty's little boy. He is 2 weeks younger then Caden and wondered what would he like for Christmas. I had to imagine him being Caden and thought, okay well at this age he would like this. I can see now why people say the holidays are hard after losing a loved one.

"He's My Son"

My cousin Cammi heard this song at TOFW this last weekend and I listened to it on You tube and I thought about Caden and this is exactly how I felt when Caden was suffering. I know he is with his Heavenly Father and Our Savior Jesus Christ now. I know they are taking good care of him. I went to the temple this last Saturday and I felt very close to Caden. I had alot of tears but I knew he was near. I love you buddy. Always remember mommy prays for you and I can't wait until we can be together again so I can hold you. Mommy

"He's My Son"

I'm down on my knees again tonight,
I'm hoping this prayer will turn out right.
See, there is a boy that needs Your help.
I've done all that I can do myself
His mother is tired,
I'm sure You can understand.
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.

Sometimes late at night I watch him sleep,
I dream of the boy he'd like to be.
I try to be strong and see him through,
But God, who he needs right now is You.
Let him grow old,
Live life without this fear.
What would I be
Living without him here?
He's so tired,
And he's scared
Let him know that You're there.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.

So many emotions

I find myself going to friends blogs and other peoples blogs that I dont even know to read there stories of there children passing away or there children that are sick. It has helped me to understand things a little more. It doesn't make things easier. Tonight as I was reading them I started to cry and thought I just need to stop reading right now. I find that I read them in the evenings after Carlee goes to bed and that is the worst time for me to read. I get very emotional. I am grateful I have these blogs to read and that I can try and give some peace to some of these moms and dads and they can do the same for me. There have been a few blogs where the moms have seemed so strong after losing there child and I ask myself, What is wrong with me? I just have to remind myself, one day maybe I will understand a little more of why this all happened. I am so glad I have this blog to write my feelings down. I just want Caden to know that every time I pray that I pray for him to be protected. I know he is, but I think it is just a mother that would do that. I love you buddy. Mommy

Prettiest Mom

Before I was a Mom ,
I never tripped over toys or forgot words to a lullaby.
I didn't worry whether or not my plants were poisonous.
I never thought about immunizations.

Before I was a Mom -
I had never been puked on.
Pooped on.
Chewed on.
Peed on.

I had complete control of my mind and my thoughts.
I slept all night.
Before I was a Mom,
I never held down a screaming child so doctors could do tests.
Or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night watching a baby sleep.

Before I was a Mom,
I never held a sleeping baby just because I didn't want to put her down.
I never felt my heart break into a million pieces when I couldn't
stop the hurt.
I never knew that something so small could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom.

Before I was a Mom -

I didn't know the feeling of having my heart outside my body.
I didn't know how special it could feel to feed a hungry baby.
I didn't know that bond between a mother and her child.
I didn't know that something so small could make me feel so
important and happy.

Before I was a Mom -
I had never gotten up in the middle of the night every 10 minutes to make sure all was okay.

I had never known the warmth, the joy, the love, the heartache,
the wonderment or the satisfaction of being a Mom.
I didn't know I was capable of feeling so much, before I was a
Mom.

My tears wont stop

It is late and I need to go to bed. I tried to lay down and fall asleep but I just cant. As I layed there in bed I prayed for comfort and peace. I was thinking about Caden and I started to cry. I miss my little guy so much. I am so grateful I have a wonderful support group. I cant imagine doing this on my own. I keep thinking of all the memories with Caden and wish I could just hold him in my arms and rock him to sleep. How is this ever going to get easier. I just dont see it. I love you Caden. Love mommy

A big Thank you

I wanted to sit here tonight and just let you all know how grateful I am for all of you. Our family has been so blessed. Thank you so much for the prayers, thoughts, dinners, visits, and donations. My husband and I can not even imagine doing this all on our own. I am grateful to my Heavenly Father and Savior Jesus Christ. I dont know where I would be without them guiding me and supporting me. This has not been a easy road. I am grateful I have many people to talk to. I know sometimes people worry about talking to me about Caden, but dont worry. He is my little baby boy and I love to talk about him. He is my angel baby. Thank you Thank you so so much. We love you all. Jessica and Tommy

Caden's Bear

Caden's bear along with a bouquet of yellow roses were put on top of his casket with his yellow quilt. The bear now represents Caden and will be treasured always. He will now be in all of their family pictures.

Yellow roses grow in heaven, Lord pick a bunch for me. Place them in Caden's arms and tell him they're from me. Tell him that I love and miss him. When he turns to smile, place a kiss upon his cheek and hold him for awhile, because remembering him is easy, I do it every day. There's an ...ache in my heart that will... never go away.

Remembrance Video

We love you Caden, you have touched our lives in so many ways. God be with you till we meet again.

I am a child of God and He has called me home.
My earthly journey's through but still, I do not walk alone.
He leads me, guides me, walks beside me, helps me find the way.
He welcomed me with open arms. I live with Him today.

I am a child of God and I have gone ahead.
My earthly life was brief but oh, such peace and love you gave.
You loved me, held me, stood beside me and though I cannot stay.
You gave me much to help me and I live with Him today.

I am a child of God and I will wait for you.
Celestial glory shall be ours, if you can but endure.
I'll lead you, guide you, walk beside you.
Help you find the way.
I'll welcome you with open arms
One bright Celestial day.

Funeral arrangements Saturday June 12, 2010

Saturday June 12, 2010
LDS church building
Gila River Ward
4125 W. Baseline Road
Phoenix, AZ 85042

The family viewing is from 10:00-10:30am

Family and friends viewing is between 10:30-11:15am

Family Prayer- 11:15-11:30am

Funeral- 11:30-12:30

Holy Cross cemetary
10045 West Thomas Road
Avondale, AZ 85392

We need to be at the cemetary by 1:30pm. We have to done by 2:00pm

There will be a family luncheon at our ward building in Laveen at 2:45pm

Thoughts on Caden

Thank you everyone who has helped out our Family while Caden was in the hospital, it has truly meant the world to us. Things are very difficult at this time, and it is a real effort to hold together right now. We know that he is where he is needed right now and that he loves us, and we know we will be reunited with Caden when we pass on as well, we have incredible and the only possible lasting comfort from that knowledge. But it still does not take the wound away completely, I feel that the pain won't truly be healed until we are with Caden again and with our Family forever. Words cannot truly or accurately describe the depth of feelings both spiritual and temporal which flow through you at a time like this, having no other experience to compare it to, I feel there is a reason for all of this and intend on using this opportunity to draw closer to Caden and to Jesus Christ in those feelings and times in which words fail but the spirit and the depths of the heart do not. You pour your heart, spirit, love, wishes, hopes, dreams, and purpose into your children and something like this is very deeply affecting, but Caden still has all of those things with him from me and Jessica, this event does not change that. It will just be a day to day path back to him, it's not all downhill or uphill from here, but the presence of our loved ones around our family will help guide us down the path that ultimately leads back to him. There will be good days and there will be bad ones, I really believe I will be needing to visit with Caden a lot through prayer and through the Temple, he will continue to be an integral part of our Family in the years to come. Nothing in life focuses your purpose and literally everything you do as does the desire and goal for the true happiness of your children, either here on Earth or waiting patiently for you on the other side, the purpose is the same. We love you Caden and we know you love us, we are doing our best right now, please don't be too sad for us and the way we feel, we just miss you a lot right now but I promise it will get easier every day that passes, the closer it gets to seeing you again.

Tommy Johnson

Caden Lee Johnson

Hi everyone, Caden fought long and hard during the night with complications related to his Septic Shock and lack of Immune System. He finally passed away at about 12:30pm today during a very high-risk surgery which we opted for as an alternative to him passing away anyway due to fatal lactate levels after possibly only another hour or two. Caden was sedated and in comfort when he passed away, and we were able to talk to him and hold him, I was able to give him a Father's blessing earlier before surgery as well. We know that Caden is where he needs to be right now, we know he was only meant to be with us here on earth for a short time, but we were able to spend some great times with him after his surgery about a month ago where for the first time in a long time he was smiling, laughing and very happy to be with us. We know he loves us and that he is now waiting for us, it will be difficult for us to get past this trial in our lives, but we take comfort in the fact that we know we will in fact see him again some day and that we will be so happy to see each other at that time. I don't know what we would do if we didn't have that faith, belief and knowledge, it would truly be more unbearable than I can even imagine. He is such a perfect little boy and has shown so much strength and courage to us during recent times, he is with Heavenly Father, Jesus Christ and his passed away family members right now, we know that for a surety. Thanks everyone for all your tremendous love and support during these tough times, it has really been incredible to see everyone coming together for us and Caden recently, it builds our testimony so much. We will update on funeral arrangements, etc. as soon as they are established. We love you so so much Caden, and we can't wait to see you again, you have taught us so much and brought us so much happiness and love, we will see you again soon!

Tommy Johnson

Caden in the PICU

Caden was moved into the Pediatric ICU last night as he was very pale, his blood pressure was pretty low and he was becoming very lethargic. When we arrived the doctors and nurses swarmed over him to stabilize his condition, thankfully, this morning things seem to be beginning down the right direction. Apparently Caden's infection caused him to go into "Septic Shock" or a poisoning of the blood by uninhibited bacteria because his Immune system had been virtually reduced to nothing by the recent Chemotherapy treatments, and his body had no way of fighting back properly. He is currently on medications and therapies which are doing a number of things, including maintaining and increasing his blood pressure and oxygen/blood concentration, artificial respiration, triple antibiotic treatments to fight the infection, and several others. He is still very sick and it will be some time before he becomes better especially with no immune system to speak of, and his little body will have more hurdles to overcome in the coming days, and there are other dangers present and possible in the next several days. I credit the expertise and spectacular response of the ICU doctors in Caden's change in condition from last night, they have truly been amazing in their care of Caden, it was awe inspiring to see them work around the clock to help him so much. Thanks for all your prayers and everything else you have done and are still doing for us!!!

Caden had to go back into the NICU this evening. His blood pressure went very low, I just talked to Jessica about a half of an hour ago, his blood pressure is going back up. That was sooo good to hear!!

Update

Caden had his 5th Chemo treament yesterday. He is throwing up more, 4 times yesterday. It really upsets him but Jessica and Tommy are right there to console him. What great parents they are!! I (Kathy) have been sick with a cold and haven't been able to be with Jessica during the day. I hope I get better real soon so I can go back up there to help her care for Caden and give her someone to visit with. Those are long days and nights at the hospital. Jessica got some cute pictures, we will add them soon. They still get some smiles from him from time to time. We sure love our Caden, its hard to see him going through this. Our emotions are like a roller coaster, but we are trying very hard to stay positive. I feel like everything is going to turn out wonderful for our little fellow!! He is as precious as they come, of course I am MIMI!!

This is my big sister

This is my big sister Carlee. She likes to hold me but when she is done I sure am glad that mommy is close by so she can catch me!! Carlee goes back and forth to our two Mimi's. She loves it at their houses, she said it is so much fun staying at our Mimi's house because she loves to make messes,especially with their water, water coolers are the best!!! Its keeping our Mimi's young!! I sure love my big sister, she likes to give me kisses!

Caden is going to have his 4th chemo treatment today. He has been throwing up at least 1X a day. Poor little guy, I feel so bad for him. I wish I could take away his pain. I think every mother feels that way when there child is sick. He has his happy moments through out the day. He loves when I talk and sing to him. Even though I might not have the best singing voice Caden still loves it. The nurses, Doctors and staff have been so good to us. This morning Caden's nurse saw me walking the hall for a while and asked me if she could take him for a while so I could get some sleep. At first I said, "no that is ok". About 10 minutes later I went out to the nurses station and asked her and she said, Sure I would love to hold him. They love babies around here. She said that alot of the babies that are here have to stay in there rooms in isolation. So when they get a chance to hold a baby they love it. I was able to sleep about 45 minutes, then I heard him crying. I went out there and I took him and he seemed to calm down a bit. All the nurses said he just wanted his mama. What he really wanted was some pain medicine. They gave him some morphine and that made him happy. Well we will see what today brings.

1st Chemo therapy session

Caden started his first chemo treatment about 30 minutes ago. It is going to be a 6 hour process today. He has been a happy camper. He just had 2 big poop jobs, so now I think he is ready for a nap. Thank you all for your prayers. We really appreciate them.

Silly Daddy!!

Tommy measuring Caden to see if he would fit into the deluxe bed that he made up for him. Why don't these hospitals have the sleep number bed!! :-)

I sure love my Mommy!!!

Caden had another blood transfusion today. Jessica is taking a nap while Caden sleeps. He was up every 2 hours lastnight to eat, he is growing, this is great!!

The oncologist just came in, it is looking like Caden will be here for another 28 days for chemo and a week home and then back for 21 days, home a week, back for another 28 days etc. A total of 5 different sessions ending approx in Dec. and then an MRI every three months for a year, and then the MRI's will be every 6 months after that. Some of the chemo can possibly be done at home. Good news is, the spinal tap showed no cancer cells in the spinal fluid!!

I love my new fish,I think I got his eyes!!

Caden says... this is my mommy!!

I love Childrens hospital!

Caden is having a blood transfusion right now, they are replacing blood that was taken out for the kidney test to determine his kidney function. The Dr. just came in and said that his ports look good and are funtioning well.

Good News

Caden had his two picc lines put in today, he did very well. He also had his spinal tap and his hearing test. We will know the results on Thursday. He went approximently 7 hours without eating, so he is a hungry boy now. The breast milk and formula is being mixed. He loves that stinky formula, good flavor we guess!! We can't imagine it tasting good, but to each his own!! Tomorrow his kidney test will take between 5 and 6 hours. He can be held and fed during the procedure. So that is great!! He likes walking the halls. Everyone tells us how cute he is. Jessica got a nap today,which was a good thing, a couple times we were contemplating whether we should duck or not!! :-) (Grandma has their password) watch out!!!

The next step

Caden will be going into surgery tomorrow afternoon at 12:30pm for his central line for Chemo therapy, spinal tap, and hearing test. They have to do the hearing test for a baseline before they start chemo. Chemo can affect part of the inner ear. The spinal tap is so they can take fluid to check if there is cancer cells in the fluid around his spine. On wednesday they are going to do a kidney test to make sure his kidneys are functioning for chemo therapy. They should get those test results back on Thursday so we can start chemo on Friday. Caden is being pretty fussy tonight. Maybe he knows more is going to happen tomorrow. Poor baby.

Here are some more pictures of our sweet Caden. The third picture was added accidently but we decided that all of you might like to see him as a newborn. We sure love our little guy, he is a fighter!!! We will add more updates this evening, Jessica is talking to the Dr. right now.

Caden at 3:30 AM this morning

Address for donations

We have been given an address for any donations to the "Benefit for Caden Johnson" It is Desert Schools Federal Credit Union P.O. box 2942 phx az 85062-2942. Thank you from the bottom of our hearts!! It is going to help so much for their medical expenses.

Donations

There has been an account set up for Caden Johnson at Desert Schools Federal Credit Union to assist in the medical expenses for his chemotherapy. You can go to any Desert Schools Federal Credit Union, the account is called Benefit For Caden Johnson. Thank you for your love and support.

Chemotherapy Plan Update

Doctor Etzl, the Director of the Center for Cancer and Blood Disorders at PCH came and talked to Jessica and I yesterday about what the plan is for Caden's Chemotherapy. He told us about a few options, and the best one seemed to be a plan that should begin in the next week or two. Basically, he would have a total of 5 actual Chemotherapy treatments, with treatments #1,3, & 5 he will require hospitalization for maybe 2-3 weeks (if he contracts an infection he would remain longer) as they will be particularly aggressive treatments, and then be able to return home for about the same amount of time before returning for the next treatment. Treatments 2 & 4 are not nearly as aggressive and might only require little or no hospitalization before he could return home again. Before they begin the treatments they will filter out bone marrow cells from his blood (very safe, non-harmful procedure), they will store and grow these cells during his treatment, and after his 5 chemo treatments are complete they will restore the cells back into his body. The reason they do this is because the #1,3 & 5 aggressive chemo treatments will probably destroy many of these cells which he needs for his Immune system, but by re-introducing these matured and grown cells from his own body after the treatments, he will be able to build up his own Immune system much better and faster. They will perform MRI scans and other tests in between the treatments to see how the Chemo is working, the entire process could take until the end of this year, that is of course including hospital time and time at home. His quickness in returning home also depends on if his white blood cell count is back up to being high enough to fight off infections after each treatment (mainly #1,3, & 5), the faster it gets up to a good count, the faster he can return home. Right now Caden seems to be doing well, he is still hooked up to a few things, but he was giggling and laughing at me yesterday, and he seems to be sleeping much better than he ever did at home. Of course Caden will always need one of us at the hospital during all of this time, we can leave for short amounts of time but due to his age we need to be there with him day and night. Throughout everything we are stuck in a shared room as all of the rooms are very full, so it's a little rough living in a shared room for possibly much of the next several months, but it's what we need to do for Caden. Thanks for all your love and support!!