Weekend update

I think it's about time to buy some of these...do they come in a 4T? Obviously, I'm joking, but seriously...
What a weekend...
Early Saturday morning Beckham woke up crying. His belly hurt and he felt warm. I took his temperature and it was only at 99F. So, I calmed him down and put him back to sleep. He woke up a couple more times with the same complaints. I brought him in my room and took his temperature. This time it was 100.8. We are suppose to call in when it gets to 100.4 for over an hour. They recommended I bring him right in and to not bother with the local hospital. Up to Primary's we went.
Beckham is still up there. He could be up there anywhere from 3-10 more days. It all depends on how his body responds to the antibiotics. He has had a fever since Saturday. They are managing it, but it spikes every now and then. It has gotten up to 104.5!!!
The docs say he has a cold and a bacterial infection in his blood. They say that this isn't uncommon, especially since his white blood cell count is severely low. Beckham's red blood cells and platelets were low too. He has a few transfusions to help with that.
Since the transfusions, Beckham has a lot more energy. He didn't want to move before. Now, he is laughing, sitting up and just talking to anyone in his room.
It's so hard to see you baby sick. He is getting better though. Hope to be back home soon!

Tired

This is hard

So, I have to start this post out by apologizing. I feel like this post may come off a little dramatic. Writing everything out really helps express how I am feeling. Not that I don't have amazing and supportive people around me...because I definitely do. I have never felt more love come my way ever. The problem is me. I find that when I am around others lately I tend to go numb. I don't know what to say or how to act. I try to be normal and hold myself together. I am a strong woman....right? I mean, I think I am. I feel like I in control of my emotions.
Then "this" happens. "This" is not suppose to happen. You see... I am a planner. Beckham has scheduled activities and play groups. Family vacations are penciled in. My life is tentatively mapped out. I like structure.
Now... I understand things happen in life. That is how life is...it's just, why is it happening to my Beckham? I hear things like you are not given anything you can't handle and that this is one of life's tests. Maybe that is all true, but how I wish it didn't involve my little boy. Beckham is an innocent child. If this is my test in life, I desperately wish it didn't have to involve him.
Despite all the difficult and scary things going on with his body he is so strong. Is it funny that a three year old boy is such an example of strength to me?
How I wish I could take this all away. I wish this was all a bad dream.
A couple days ago I woke up hearing one of my kids saying, "Mommy! Mommy!" My heart stopped when my first thought was that it was Beckham. Beckham was home, awake and ready for me to make him breakfast. Then reality hit and it wasn't Beckham, it was Navy. Beckham was still in the hospital. Of course I love hearing my baby girl's little voice. That energetic crazy little girl brings me a lot of happiness. It's just when I thought it was Beckham, it was like all of this wasn't happening. Life was "normal."
Now, I know this is out of my hands. I know that all I can do is be the best mommy I can be and take care of him the best way I know how, learning about this cancer (believe me...I have been reading up) and what I can do to make Beckham's experience as good as I can make it.
I can't help but feel selfish though. I know there is a plan in life and I know we are given things to help us learn and grow. It's just, this isn't what is supposed to be happening! I want this to go away. I want Beckham to be healthy. I want him to have a normal three year old life. Carefree.. fun.. and adventurous.
Not, in and out of hospitals.
Not being carefully shadowed. Not with all the tests and pokes and scans and just all of this. I don't want people looking at him differently. I don't want judgements.
I want to protect him from all of this. I am Beckham's mommy and it kills me that I can't just give him a kiss on the cheek and take this away. I just want to make it all better. Isn't that my job?!
With that being said, I know I just need to be strong, even if I don't feel like it. I need to give him plenty of hugs and kisses and high fives. I will do all I can to make him feel as "normal" as I can. This may not be a "normal" situation, but I will do the best I can.

Clean Doughnuts

Yesterday, at the hospital, Beckham woke up saying he wanted to have a doughnut! I was happy that something actually sounded good to him. Beckham hasn't been eating very much in the hospital. I grabbed him a sprinkle doughnut and headed back to his room.

"No, Mom....a clean doughnut!
No sprinkles."

So, I head back and grab one that has just cinnamon and sugar on it.

"No, Mom...a clean doughnut. No sparkles!"

So, then I go down to the cafeteria and find a glazed doughnuts.


It still wasn't a "clean" doughnut. Made me smile though and and eventually we got him his "clean" doughnut!

Quality Time

Spent last night and today with Beckham.
Played a game
Watched a show
Tickled an arm
Put on Pajamas
Took off Pajamas
Tickled an arm
Watched him sleep
Wake up
Rolled around
Hold down for medicine
Clean up medicine
Change a diaper
Played with planes
Watched a show
Played a game
Order food
I don't like it
Made something for mom
Change a diaper
Played with planes
Played a game
Mom will be hear soon
FaceTime Mom



Quality Time


- Posted from my iPhone

Super Hero

My little super hero! As most little boys...Beckham loves super heroes! While Brian was up at the hospital watching Beckham I ran to Costco and got him a couple costumes, can't beat $14.99. We have been telling him he is just like Iron Man with his new central line that he has in. I think he plays the part well. :)

Rosy cheeks

Sweet little boy... sleeping after his blood transfusion yesterday.

Saturday morning

Slept till 9
Waved across the hall to Spider-Man, Starting the day off right.








- Posted from my iPhone

Location:N Mario Capecchi Dr,Salt Lake City,United States

chemo day #1

Today they started the first dose of chemo. Lots of new things to be aware of and things to look for.
The nurses are training us on blood counts and all the various things to look for as Beckham goes through the process.
Beckham is doing pretty good considering he's on about a 4 foot leash with these tubs attached to his chest.
Beckham was super exited his grandma and grandpa can up to hang out with him




Beckham also found out that Spider-Man is staying across the hall from him.
He's a 4 year old boy that's going through cancer treatment, super cute boy that has lost all of his hair. He's obsessed with Spider-Man and has a full Spider-Man suit he wears around in his room (mask and all)
Beckham caught a few glimpses of him earlier today.
After mom left to go back home he was really upset. All he wanted was to see Spider-Man. As we looked out the door window across the hall the nurses noticed and went in to let Spider-Man know he was needed. Like a true super hero his suit was already on, he just had to slip on the mask. Both looking out the windows in their doors they waved to each other for about 5 minutes.
These kids are great:)




- Posted from my iPhone

Location:N Mario Capecchi Dr,Salt Lake City,United States

Buddies

When I found out the news with Beckham and how soon treatment had to start I decided I really wanted to have some pictures taken of these two. I have no idea how chemo will affect Beckham and the outcome of all of this.

I am so blessed to have some photographer friends. My good friend Chelsey was able to take some pictures of the kids a couple days ago. She sent me this little preview and I am already in love. This picture captures these two perfectly. Best buddies!

Checked in

Today we checked Beckham in at 10am he was scheduled to get an Eco-cardiogram and a small surgery.
As we got close to the hospital Beckham realized where we were going and started to cry. Saying it was "baby's turn". Meaning Navy. I felt bad:(
Beckham was hungry again because of the surgery he can't eat until after he's done. He kept asking for snacks. Me and Sarah had to explain that he could eat after his tests and then help him by changing the subject and getting him involved in something else.
The Eco was an easy test that lasted about 45 minutes. Beckham just had to lay there in the semi dark and watch a movie while the nurse rubbed a little sensor (massage ball) on his chest.



After the Eco we played around in one of the play rooms set up for the kids. Beckham loves the toys.
The surgery was putting in a central line. A central line is an Iv that is meant to be more permanent. Because the veins on the hand are so small the Iv's don't last more than a couple days. And because chemo requires allot of medication they need something more permanent. The type of central line that they Installed is called a Broviac.
They inserted 2 small tubes about the middle of Beckham's chest, then ran the tubes under the skin up the left pec and around the collar bone and then down into his heart.
On the end of the tubes sticking out his chest there is 2 fittings that the doctors and nurses can attach the Iv tubes.
After the surgery Beckham checked in to a room where he'll be for the next 5-6 days while they start him on his first cycle if chemo.
That will start tomorrow.
It's was a tough day. It's hard seeing Beckham go through this, he is such a brave boy we love him so much.
Sarah is staying with him this first night.

- Posted using BlogPress from my iPhone

Early day

Today we had to be up at Primary Children's at 8am for a hearing test and another scan






- Posted using BlogPress from my iPhone

Location:N Mario Capecchi Dr,Salt Lake City

Zoo and Dinosaur Museum

Fun weekend before more testing and treatment.

School

Beckham's preschool really impressed me yesterday. I told them about Beckham's condition and that he will not be in class very much...or at all.
I was overwhelmed with emotion as they told me they wanted to help us as much as they could.
This is what they told me,
- They can mail is weekly packets of the activities they do in class.
- Skype him in when he is missing his class so we can still "participate."
-Send a letter home to his classmate's parents informing them of his condition and to be careful sending their child when sick.
-When he does attend they can have all the kids in his class wear masks
-Potential help with their humanitarian projects they do. (I may have this off.)

I didn't expect them to do any of this. I didn't ask what they could do. They offered all of this right off the bat. I know Beckham is only 3 and preschool is such a little thing, but I wanted him to have as much "normal" in his life as possible. He loves his school and I'm so happy we can make this work.

More Tests

Today the Beckham had a Bone Test done. He had to be sedated again so he wasn't able to eat or drink this morning. We checked into the lab at Primary Children's at 11 with the test scheduled for 1.
He didn't want to get out of the car when he realized we were pulling up to the hospital. We were a little early so we told him that we could go check out the Spider-Man statue if he wanted. That got him moving.




They had to put in an Iv, today Beckham wasn't going to let them do it. He's had enough of these nurses putting needles into his hands. I held him in my lap very tight.
I'm glad he forgave me for holding him down. 15 minutes later we all was forgotten as we played with the play dough the nurses had given to him.
They explained that the bone scan measures the amount of blood that is being sent to various parts of the bone. Typically the growth plates are where most of the blood is at. They look for areas of bone that have more blood activity than normal.
The test went well.
We'll be back tomorrow at 8:30 for another test


- Posted using BlogPress from my iPhone

Location:W Golden Pond Way,Orem,United States

Beckham after his first CT scan. Brave boy! He is doing so well with all his test so far.

Love you forever

“I’ll love you forever,
I’ll like you for always,
as long as I’m living
my baby you’ll be.”

Beckham gets to choose his bedtime stories after he brushes his teeth. He has his current favorites in his room in a little stack and we usually read them for a few nights before he decides he wants different ones. On Wednesday night, the evening we were told they were certain it was cancer, I picked up his stack of books and this particular book was placed in the mix. Even though this book has been in our collection for years, he has never selected it.
When I sat down next to Beckham's bed and asked him what book he wanted me to read, he wanted none other, but the "I love you forever" book. Of course, this is such a special book...just with the news we received that day it was not one that I was particularly excited to read. I told myself that I don't want to cry in front of him. I don't want him to see me sad. I tried offering other books in the stack.
He insisted though...

“I’ll love you forever,
I’ll like you for always,
as long as I’m living (or I'd rather say instead, "Forever and ever")
my baby you’ll be.”

Children are so aware

(In the car)
Beckham: Mommy...Mommy...

Me: Yes, Beckham.

Beckham: Mommy...I sick. I sick Mommy.


Now, I don't know if he really comprehended what he was saying...but, I know that Beckham is very aware of what is going around him. He is in tune with other's feelings. He is such a sensitive little guy. I already find that he is comforting me in all of this. Which I don't feel is very fair for him. I'm supposed to be the strong one. Not my sweet Beckham...putting his hand on my face...saying, "Don't cry Mommy. It's okay. It's okay."

So for now, I am working on stay as positive as possible not letting him see me upset. I don't want him to feel scared or concern.

A little history

When did I start noticing all of this? Beckham had his 3 year old well check up this past June. He has always bruised easy, but it just seemed to be worse. He also started squinting one of his eyes from time to time. I brought up my concerns to his doctor and was told that we would watch it and to just note any changes. Nothing at this point was alarming.

About 3-4 weeks ago Beckham started getting some bruising around his eyes. It started with his left and moved to his right. After about a week and no real sign of improvement I started to think I should take him to the doctor. With concern from other friends and family I decided I definitely needed to take him in to see what was going on.

August 26th...
I called first thing that Monday. Luckily he was able to get in with one of the nurse practitioners. They looked over him and ordered labs to get a better idea of what was causing the changes in Beckham. After getting Beckham's blood work I was told that I should hear back from them that evening.

So, we went about our day. I had errands to run and needed to get Navy a new bed. I welcomed the busy day that I had. My mind is good at running away from me...I was sure that it was simply something like a vitamin deficiency. It couldn't be anything worse...just couldn't. I have to admit that I did have a feeling in the back of my mind that this wasn't good but, that thought was being pushed aside and I tried to not get too ahead of myself.

Around 5pm, I got a phone call from the doctor with the test results. As the store associate was loading Navy's new bed in the back of my car I decided it was fine to take the call.

That is when I was told that Beckham's platelets, red blood cell and white blood cell counts were low. I would be going up to Primary Children's the next day to meet with an Oncologist.

I eyes were burning and there was a lump in my throat. I had to fight back all emotion while the associate was finishing with his work. I didn't want my children or this stranger to see me upset. I just wanted to crumble though. Something could be wrong....very wrong for them wanting Beckham up at an oncologists office the next morning and to possibly to get a bone marrow scan.

Brian was still out of town at this point. Thankfully, his mother was able to go up with me and finding a babysitter for Navy was easily set up. We headed up early to the hospital. So many senerios were playing in my head.

The appointment went really well. After meeting with the oncologists they didn't think that Beckham had cancer and cancelled his bone marrow biopsy and decided he needed more blood work done. Cancer was off the table. This was great news, but for whatever reason did not settle my racing mind. I still felt like something was very wrong, but chalked it up to being a worrisome mom.

Left and right I was getting words of encouragement and positive affirmations. It felt good to hear all of this. (We really do have such am amazing support system.) I still had that nagging thought in the back of my mind...something is really wrong.

Beckham had more blood work done at Orem Community Hospital. The ladies in the lab are simply amazing. Beckham held so still that first follow visit and barely cried. They told him he was such a brave boy and loaded him up with treats and toys. Beckham always made sure to get some extras to give to his little sister.

We had to go back a couple times last week. When we pulled up for our next visit it broke my heart to hear Beckham cry saying that he didn't want to go in and that he didn't like this place. After the labs that day I called up to primary children's and asked them if there was any possible suggestions to what was going on. I told him that Beckham still had the darkness around his eyes and it didn't seem to let up. With that info they decided to do some more testing. One test in specific was a urine test to check his hva and vma levels. If the acids were high, then it was a sure sign of a tumor.

The C word

My sweet baby boy has cancer. Stage 4...neuroblastoma to be exact. Even just typing it out feels so surreal. I'm rereading the first sentence over and over and it feels the same as when we heard the confirmed outcome...this is just so hard to accept.

Beckham has cancer. My sweet little boy has cancer.

There is no denying it or fighting off that scary word as a possibility anymore. Cancer is now going to be a frequent word in my vocabulary.

Sarah

Tests Confirmed

Yesterday after hearing the findings from the Bone Marrow scan the following day and the CT scan performed earlier. Both of which confirmed the earlier prognosis.
This is real. Earlier I thought that there must be Cancer but not to much. Now they have seen it in the cells and in his back chest and head.
I asked Dr Fair if the cancer would effect Beckham's eye sight. He said No. Once the chemo treatments begin to take effect the tumor will shrink back and by the end disappear.
They most likely will do a bone marrow transplant. Which seems like a radical surgery but in reality it's about as basic as injecting mainline i v.
He explained that after about 2 chemo treatments, at the point when Beckham's bone marrow has been battered by chemo but still alive and the cancer almost gone. At that point they will extract a portion of the marrow using a needle. This is done to save a small portion before it is completely wiped out by the final treatments of chemo.
Once the cancer cells are no longer active in Beckham his own marrow is injected back into different areas and it will then quickly grow back to normal levels.
Dr Fair delivered this news in the best and most gentle way possible. I really am impressed with the Doctors and Nurses at Primary Children's. I have noticed the hospitals mission statement posted in different locations around the hospital. A portion of it states that "It is all about the Kids". I really do believe that they live up to their commitment.
In closing with Dr Fair, Sarah made a comment that I myself had been thinking. To Dr Fair, She mentioned that it must be so heartbreaking to work with sweet children with such problems.
He responded that it was his joy to work with these children because most of them he is able in part to bring back to full health.
He said this in the most positive way.
Remembering what he said gives me the confidence that Beckham can beat this.
With the help of Doctors, Nurses, Family and Friends and most importantly our Heavenly Father Beckham and our family will be able to overcome this experience.


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Sept 11 2013

Our little family received life changing news from a doctor at Primary Children's Hospital. In a small waiting room on the 4th floor in the Oncology Department. We were given the news that we had prayed and hoped that we would never hear.

We were gently told that after the blood tests, a urine test and a physical exam. The specialists and doctors were certain that Beckham did indeed have cancer. Their prognosis was that the cancer had advanced to a stage 4 and had most likely spread to the bone marrow and other parts of the body.
Its hard to describe the feelings a parent feels when you are given this sort of news about your child. Its like its not real and this must be a dream or a mistake. Beckham is fine, what are you talking about? Should I have even come here? Can we go home and pretend this never happened? Wait this isn't really happening.
Once the initial words had a minute to soak in the doctor softly moved forward in saying that he was certain that he was able to feel a tumor near Beckham's spleen when he did the physical exam earlier that morning, and that they were sure that there was cancer around Beckham's eyes and that is what has caused the dark circles.
My thoughts, Oh no... why are you telling me this? Cant you be positive? How can that be? Why are you saying that? No...Oh no...
The doctor then explained that they still needed to perform more tests to collect more data to really know how to put together a proper plan for treatment. By additional testing they will know exactly how extensive the cancer has spread and where it had spread to. This would take at least 3 more scans. The first of which would be tomorrow and 10am (thursday 9/12) a CT scan.
We are confident that Beckham will beat the Cancer. The doctors are all very impressed with his strength and energy. He has been so brave and co-operative thru all the tests. When the nurses come in the room to take his blood or to insert an IV he knows what is coming and does cry a little and say he doesn't like this, but he doesn't pull his arm away. He will let the nurse take his little arm and poke without even moving a muscle to resist. He will just cling to mommy or daddy and cry.
It broke my heart when Sarah told me about the 2nd time she went back to get another blood test at the Orem Hospital. When Beckham realized that they were going back to the hospital he began to cry and through his sobs said "oh know... this is a bad place" Even though he was scared he still let the nurses take the blood because mommy was there for him to hold on to.
What a brave boy.

Location:W Golden Pond Way,Orem,United States