3 months later

Posted by David's Mom on February 17, 2009

Well,

It has been almost 3 months since I lost my hero….3 months and the hole in my heart still gapes.  Saturday

some friends had a birthday party I attended and I was doing ok except when they sang happy birthday to

 someone named David.  I broke down AGAIN  (big sigh) Davey was such a big part of my life and of our

family and everyone feels it.  Seth wanders aimlessly he was used to having somone always ready to play

 with him and now he bugs the mom ceaselessly for someone to play with or watch movies or play games

 with.  Kyle walks around looking for someone to be angry at…Cj just plays games all the time so he doesn’t

have to feel.   I wander aimlessly with no motivation to do anything.  I like to think though even though we

haven’t figured out what to do or feel without him that he is waiting for us to catch up with him.  I hoping he

 driving  everyone crazy rollerblading in heaven zipping to and fro……racing around like he could not do

while he was sick.  And I will bet he has the biggest smile on his face….

          These pics were taken on October 16 2008 doesn’t my boy have the greatest smile!!!!!!

Filed Under: The Journey - Comments: Be the First to Comment

Davey

Posted by David's Mom on December 4, 2008

I want to let everyone know I will update this a little better when I can think again.  David lost his fight to cancer on November 24 at 2:37pm with all his family surrounding him…and his mom holding him tight just as she promised.  We are still trying to raise funds to help pay David medical bills and funeral expenses.  When these are paid we will be raising funds for Phoenix Children’s Hospital @nd floor kids (where David spent most of his time)

Filed Under: The Journey - Comments: Be the First to Comment

The next step……

Posted by David's Mom on November 19, 2008

November 16, 2008.  David is not feeling well….He was throwing up and totally not feeling well.  Then when

getting up to use the restroom….He fell.  Which right now now is very bad and on top of everything else he

hit his head.  So down to a CAT scan to check his head and that came back clear WHEW.  But the next day he

 started having  problem breathing.  So a trip down to ICU…which is where we are.  He has a chest infection

 and a blood infection.  They are trying different antibiotics but haven’t found just the right combination

 yet.  I have to tell you I am scared really bone deep scared.  I don’t know what to do or what I am supposed

to do.  When do I say enough.  On top of these infections the “sticky prodical” look like it may have not work

because David still has cancer cells in his blood.   I need all of your prayers and love for my David PLEASE

Filed Under: The Journey - Comments: 3 Comments to Read

The next step of the journey….

Posted by David's Mom on November 5, 2008

So… we start chemotheraphy…..every week we go in and David gets Chemo through his Port or through his back (lumbar puncture) sometimes both.  We deal with the nausea….rashes…lack of appetite….the hair loss…and everthing else that goes with having to do chemo.  December…..January…..February….we started radiation to go along with chemo……finished radiation…..March……April…..May…….June…..everthing status quo….Davey tolerating everthing ok……

Then July ….David starts running a high fever of an unknown origin.  We are admitted to the hospital and put in isolation.  They run tests…and they find NO reason for the fever…..They tell me that this NORMAL due to the fact that David is neutropenic (he had zero neutrophil white cell ), but that they would continue to run tests….and add all sorts of antibiotics (seven total)…..and David shakes with the fever and hurts from having the fever for so long and I feel helpless because I cannot fix it and make him feel better.  For 18 days David runs this fever of unknown origin.  To this day no one can tell me what caused the fever BUT David got better on his own……and we got to go HOME YEAH!

 davey in July

August….David starts maintenance chemotheraphy which mean he can start to be more normal….and he start his first day in high school at Hamilton High School as a freshman.  He starts out slow half days…he gets tired easily but he is going…and I am very proud of him.

September 14…..David starts running a another fever and we go to the emergency room but they say he is fine so the amp him up with antibiotics take some blood work and send us home. UNTIL 11:45pm that same evening.  I get a panicked call from the emergency room…David should have never left the hospital….he had contracted a Gram-negative bacteria and had to be on constant antibiotic…but the doctors told us that we would only be at the hospital one week.

Day 6 of the one week…..our doctor comes to me looking very grave….David blood test showed cancer cells….he has relapsed.   It is my worst nightmare….I was devestated….we did everything that we were told and still this cancer came back.  The doctor were only giving him 10% or less chance of survival and that he would need a bone maroow transplant when we got David cancer into remission.  With a flurry of activity we give him a Broviac Port for acess…we do a bone marrow aspirate (removing bone marrow for testing) and they rell me we will have to start chemo again.  I was so disappointed for David and I was heart broken.  They decide to put him on a high dose chemo….the drug he had had before but the dose would be 80 times what he had before.  We do this chemo for 2 week and then we wait….and wait some more.  About day 21 ….David has no cancer cell….YEAH……….but that only last for six day and then the cancer cells are back.

Damn….so we try another chemo drug called Nerlarabine….he got this drug over a 5 day period….and had a panic attack when I found out that it costs $58,000.  But who cares…I think what are they going to do reposses David???? I just want him to be well so lets do it.  And then we wait…..and then the cancer never goes away…it goes down for awhile…but never goes away.  So I am at near panic purportions…we have been at the hospital for six weeks and we still do not have his cancer under control and if we can’t do that he cannot have the bone marrow transplant that will ultimately save his life.

So on Halloween, David’s doctor suggest we try a really different approach….one that has helped some to the kids in David level of cancer.  It is called “sticky prodical” and as we speak David is getting it by IV.   And is it showing some results…so I remain hopeful……hope that this is the right combination of chemo drug….that they can find a Bone marrow donor since no one in our family matches David…..HOPE is all I have right now….and what is keeping me from falling apart……Keep us in your prayers….we NEED everyone we can get. Love to you all

 

Filed Under: The Journey - Comments: Read the First Comment

A Journey with my son

Posted by David's Mom on October 15, 2008

A journey with my son….you would think I would talking about times filled with fun, laughter and giggles…but alas it has been filled with all of that only because of the type of son I have.

The beginning of this journey started in September of ‘07.  My Davey who is never sick got a cough and found it hard to breathe, we went from doctor to doctor where we lived in a rural area and we always got the same “it’s just the flu” or “he has a cold”.  But in the middle of October we moved back into town…….and my Davey still had his cough.

I was perplexed because everyone kept telling me that he was fine and there was nothing wrong, so that’s what I kept telling him “go to school, it is in your head..there is nothing wrong”.  This cough was so persistant I took him to our REAL pediatrician (one we would have gone to if it hadn’t been over 2 1/2 hours away) but since we had moved he was right around the corner.

So we went….and they thought that my Davey has asthma and that is what thy treated him for….and while he was on steroids he felt great but when he finished he would go back to feeling awful.  We kept going back and forth treating my Davey until one night he had a REALLY bad night. It was so bad I called the on-call doctor who instructed me to bring my Davey the next morning when I brought his brother in for his appointment.

December 5, 2007, a day I will never forget….it started very innoculously….we got up….got ready…and went to our appointment.  The doctor seemed very concerned gave my Davey another breathing treatment…and then told me he wanted a chest x-ray that he wanted me to bring back to him to read and blood work for both boys, I thinking, “Ok no problem I will back to work at 1:00 p.m”. If I had only known that would never happen that day.

So we went to the lab first and Davey told his younger brother that he would go first to show him it was easy and it did not hurt.  The technician drew his blood…gave him a bandage….he stood up and then passed out.  It took us several minutes to wake Davey up.  We moved him to another room where he could lay down for a few minutes…where he promptly threw up all over the place.

I am thinking “what in the world is going on”  Davey had never been sick, had a problem getting blood drawn, so I knew something was going on but what I wasn’t sure.  When Davey was feeling better we went to have his x-ray of his chest.  That at least went quickly with no incidents.

We went back to the doctor’s office and the doctor looked at Davey’s x-ray.  He called me out of the room and told me he had concern “the heart looks big to me”….he then called a friend who was a pediatric cardiologist and asked if he could see Davey as a favor.  So the next thing I know Davey and are having to drive to Scottsdale (long way from where we were and in traffic).  But we get there and they send us back for an echo cardiogram (ECHO) of Davey’s heart.

As the nurse takes one swipe over his chest she nonchalantly say “I need the doctor in here ” as she leave I look up at the monitor and see me son’s heart on the monitor….surrounded by fluid.  I swallowed my shock thinking to myself  ” what in the world..how long has that been there??”  I went white with shock and I was that Davey was laying down and couldn’t see me.

The doctor came in looked at the screen briefly and came over to me “we will have to admit your son to the hospital”….I was thinking “DUH!!!” but kept my sarcasm to myself.  He called ahead letting his associate know that we would be on our way to Phoenix Children’s Hospital.

When we arrived we were not there 5 minutes and they had Davey back in for surgery….in fact they did not take off his shoes, pants or anything else except his shirt.  They let me kiss him and sent me to a room to wait….and wait.

It seemed like forever before the doctor came to get me.  He told me the procedure to drain the fluid off from around his heart went well BUT (I HATE BUTS) they found blood in it….and that something much more serious than a viral infection was going on but what….they did not know and they would have to run more tests.

By midnight, I have a hematologist (Blood Doctor) take me in a conference room to tell me that my Davey had cancer, he couldn’t tell me what kind yet (we had to do ALOT more tests to do to determine that).

I looked at him in disbelief…my Davey who is never sick…laughs at us when we get the flu or a cold has CANCER!!!! He looked at me and inquired “would you like some kleenex?” I took a deep breath and then said “what do we do next?”. I figured crying wasn’t going to fix it and all it was going to do was give me a snotty nose so I would skip that part until later MUCH later.

He informed me that we would have to do a lot of tests before we could determine exactly what type of cancer and how we would treat it….the longest day and half of my life.

They did lumbar puncture to check his spinal fluid, x-rays, ct scans, ultrasounds, placed a PIC line(like an IV but longer lasting), bonemarrow aspirate (inserting a needle into his hip bone to withdraw some of the bone marrow to test it).  By the 7th we knew what we were fighting…Acute Lymbastic Leukemia t-cell.

My heart dropped…Davey had the kind of cancer that only 10% of the kids ever got, and on top of that he was 13….almost 14 which means he was 4 years out of the age group.  What did that mean…it means Davey was considered HIGH risk…with a low propability of survival.

To be continued

Filed Under: The Journey - Comments: 4 Comments to Read



top