A chronicle
of
 Joey's battle against Leukemia

6-17-97
Dr. Scott does a bone marrow aspiration, confirms diagnoses of ALL, Surgeon consulted to put in a central line.  

6-18-97
Central line placed.  We choose to go with a broviac, a line the
actually sticks out of the body.  We had the choice of a port that is under
the skin.  Joey is very scared of needles and we think it best to go with the
option that does not cause pain.

6-19-9
They started the Chemo, They gave it last night.  The Dr. just came in and told us they gave him the wrong chemo.  They gave him Vinblastine instead of Vincristine.  Your in lots of pain.  It is so not fair, I want so much to take your pain away.  You really want to go home.  I have been trying to learn everything I can about ALL.  I just cannot believe that this happening.  I am struggling to hold back my tears.  Scared of the possibilities.  This Chemo is strong stuff.  I still cannot believe you got the wrong stuff.

6-22-97
Called Dr. Gera and they admitted to hospital for short stay/observation. Cannot hold the medications down, every time we try to give them you throw them up at us.  1:10 pm gave you a drink of chocolate milk, started to complain of tummy pain.  Nurse ordered some lunch, cheeseburger and chips.  We will see if you will keep it down.  2:30 pm You nibbled for lunch kept everything down fine. 4:00 pm. Drew blood, started IV gave IV form of prednisone since you will not take the medications.

6-23-97
Went home learning to swallow medications.  We learned to take a
starburst fruit chew and put it in the microwave, then when it is soft to
wrap the pills lightly in the soft chewy stuff.  Then when you pop it in your
mouth, if it does not go down the first time, you still do not taste it.

6-24-97
Dear Joey,
Your life has changed, I wish with all my might that this week was a bad
dream.  You have been found to have Acute Lymphocytic Leukemia (ALL) Already to day 6 in treatment.  You've been real strong, even though it is painful and yucky.

6-25-97
what a big day and it's not even 2 pm.  Up early and off to the hospital.  At
9:30 am you were off to the treatment center for a bone marrow aspiration and a lumbar puncture.  They put the chemo in your LP (lumbar puncture) plus you had a shot in your leg (chemo) then vincristine through your line.
Yesterday Daddy and I bought you a game boy, you seem to have misplaced one of the game cartridges.  You get OH so angry and upset.  From what I
understand it is the prednisone.  It really makes you strong as well as
grumpy.  Being that you are sick it is hard to be angry or even to not let
you stomp all over me.  Believe me you are doing a good job of getting what
you want.  IN my. ... lost my train of thought the nurse called and your
marrow showed you to be in REMISSION!!!  Day 7 I think it is amazing!! With all the tears I've been shedding ... these are the best tears! ***
I cannot explain how it feels every time you get hurt.  It was always tough
watching you in pain.  When you fall down or when your feelings get hurt it
is so difficult to handle.  In the last 8 days I have watched them pick, poke
and really hurt my little man.  I hate every shot, and every tear you have
had.  I do not know how it feels to be real sick.  I know you are brave and I
know with our family love we will get through this tough time.  28 days of
real difficult medicine.  You are doing so good. Someday I want you to sit back and read this while you are well and old.  I want you to be a Grandpa if you want to be.  I want you to ride roller coasters, even jump out of planes if you still want to when your "53" because before that I think I would just freak out!  Thank you Lord for Remission Today!!!

I love you Joey,
Mom

6-26-97
Sweetie,
Surprise, Surprise we have had a pretty good day.  After all the treatments
you had yesterday I was expecting you to be miserable.  Grandma Alvarado was here today and you got a nice chance to talk with her.  She washed and ironed all of Daddy's uniforms.  Now we won't have to worry about them.
Daddy will be home right around 4:45 pm.  I really get excited for him to
come home.  It is hard to be here when you don't feel good and it's great
having Daddy home to help.  He plays and talks with you. I've been trying to talk you into cutting your hair.  It's longer then what was usual for you.  They said around 10 days it will start falling out.  I am not worried about how you will look, but instead worried about what you think about it.  Your face is so dang cute. Today you talked a lot about Natalie, you are still real excited about having a little sister. To be honest, I am a little worried about caring for the two of you.  Being in remission is a great feeling! But even still you have so much work ahead of you.  Yesterday I just lost it.  All the emotions, of you hurting and not feeling well gets under my skin.  I try to always be strong.  But one day when your all grown you will see I am a big softy who cried when I had to force you to take your medicine.  It may seem to you like I am made of steel, I actually thought the same about my Mom. It seems that things in life have a way of changing me, and I know it will change you. I no longer feel real talkative, or really like my old self.  I want to make you feel the best that I can.  I want you to feel my love and support each minute. Tomorrow we are going to the clinic at Michigan State University it will be our first time there.  We still have Grandma and Grandpa Wickens car so we won't have to ask anyone for a ride.  Tomorrow you will get another shot in the leg.  It will be your 4th shot of 9 shots.  They are painful and I have numbing cream to put on your leg but it does not seem to help at all.  You get very upset. ( I do not blame you) I hope we like the clinic, we will be going there a lot so I hope it is comfortable. Grandma Alvarado talked to the news paper again and your name was in the paper.  It has generated a lot of mail and you sure get excited when we go to the mail box.  I hope you feel wonderful and I will do all I can for you to feel good.  Please, Please, Please little man take your medicine without TROUBLE.

Love,
Mom

6-27-97
First day to the clinic, it went pretty good.  You got a shot and blood
drawn.  They gave you 2 toys you picked a game for older kids and a beanie
baby. We had pizza last night and you threw it up.  Today you begged for it.
Now your in bad pain.  I think it's heartburn.  I gave you children's Mylanta.  
Now we are waiting to see if it works. You are still due your meds tonight.  UGH I can't imagine you taking anything right now.  I got the heating pad, Daddy is rubbing your tummy, you are abusing him, pinching, pulling hair. Ect...  I guess sometimes it's the only thing that makes you feel a little bit better. I swear we won't have pizza in this house for a while.  I am so awful with
throw up.  You've been doing your share of it. Aunt Patty brought the girls by, we went out front in the fresh air to say Hi.  I think you were all kinda nervous, the first time you were with your cousins. Sharon from across the street came to visit she really likes you.  She was glad you were feeling better.  Then Uncle Noe came to being you cases for your hockey cards.  He also brought you a cool Batmobile!  Today still you received lot of mail.  A really great coloring book & crayons came from a total stranger.  It's really nice to know that there really are super people out there. I went to Meijers, first time away for longer then like 15 minutes.  I was Kelly a Mom from my old daycare.  She did not know about the ALL.  I told her and we decided to talk later as we both teared up in the shampoo isle. I got you new shoes, and food type stuff, when I check out a lady was new and was taking forever to check out. When she got to the shoes she acted like I switched box's.  She called for help and she called the shoe department.  I wanted to be home so bad, I began to cry in front of the whole store.  I could not stand wondering if you were okay. Looks like the Mylanta is working.  I'm gonna just let your tummy settle and try to give your meds to you later tonight.  You cried when they gave you shot!  T hate that so much.  They told me the percentage of bad cells was 1-2% they were happy!!! Looks like the meds are working.

I love you,
Mom

 

6-28-97
Joey,

What a great day you have had today.  It felt like we were really getting
into the swing of this.
You sure have an appetite, we together made dinner.  Chicken & rice with corn
on the cob.  I finally had to put the food away, you would have ate it all.  
You are constantly begging for food.

A nurse came over today to help me change your dressing.  I did most of it
and actually after a little nap this afternoon it was falling off.  We tried
a new sticky part, and it is not working very well.  You seem to sweat so
much when you are sleeping you sweat the bandage off.  I felt actually real
comfortable changing it.

You are making hearts, for cards.  Your so cute.  The starburst trick for the
pills is really terrific.  We are now not fighting like cats & dogs.  The
weekend is real nice with Dad here.  Grandma & Grandpa Wickens are coming
home from Vegas tonight we had there car while they were gone.  I am gonna
have to see if we can get a ride to MSU on Monday and Wednesday.  We have to go Friday to Out patient in the hospital because it is a holiday.  Now, to get your ANC (actual neutrifil count) levels up.  It is still very low.
The important thing is to keep you healthy.  Really you have not been a sick
child.  Just trouble with your ears.

Today is a real UP day.  I am feeling so great about you getting better. When you hurt or feel bad I lose some of my control.  It is nice to feel together, and today I do feel good.

I love you Pooh Bear!
Mom XOXOXOXOXOXOXOXOXOXOXOXOX

6-29-97
Another good day!  Today around noon Grandma Wickens came over and we went (me and her) to target & meijers.  We got you some more comfy type cloth's.  She got you a few outfits and Mom got you some too.
Grandma got you new movies, 4 of them.  That should keep us busy.  We also
went and bought food your favorite!  Right now you are eating popcorn.  I
made Daddy his lunch for work tomorrow and I had to make you a lunch to take to the clinic.  Grandpa Wickens is picking us up to take us there tomorrow.   I just dread putting the cream on your leg to numb it for your shot.  I am not sure you know you are getting a shot tomorrow.  They will draw your blood and I am hoping for some high counts.  That would make my day!

Daddy is taking you out for ice-cream.  I am so in love with you tow guys.  
Each one brings everything to my life. I have to say I get nervous when anyone takes you out in public.  I am scared you will catch something, or catch something from prepared food for a restaurant. Your hair is still all here, as attached as I am to rubbing your soft hair, so wavy, smells so good. I am hoping you still let me rub your head without hair on it.

I have Faith dear Son.  I have faith that you will grow to a sweet little old
man.  I think I am naming our new little baby, Natalie Faith Alvarado.  We do
have lots of Faith, lots of it.  I also believe when the days are long and
you can't get everything done, you feel tired.  I feel tired too.
I wonder sometimes if any of my friends have a clue to how I am feeling?  I
feel stuck in a tub which I cannot actually see or really feel, but stuck in
there.  No choices of my own to make.  Just rules to follow.  I am following
all the rules set up for me to follow, it is not fun to do.  As many of these
things include taking you places that you cry and they poke you.  I really
stinks having to watch your child hurt.  I would never want anyone to have to
feel this.

I Like the Name Natalie Faith, we will see what you and Daddy think?

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Last Updated: 05 May 2010 03:58 PM