Help us reach our goal!

Hi, the family and I have decided that we are going to attend the 4th annual walk for Neuroblastoma in Ft Worth. Our goal as a team is to raise $500. If you can donate in memory of Cooper, please do. You can go to www.nbwalk.org and click the make a donation now button. When filling out the donation design form you will be going to Jessica Campbell. (When setting up the team they asked for full name and it ended up being the team name, not very clear instructions). We know we are team Cooper! If there are any questions about the walk or anything else please feel free to leave a comment.I will reply as soon as I can.

Thanks in advance,

Jessica (mom)

Happy Birthday Cooper!

January 31st was Cooper’s birthday. He would have been 5. Experiencing the day without him was not as hard as I expected it to be. We held a balloon release at the cemetery in memory of his day. It was a beautiful sight to see a lot of people there. I want to thank everyone who came out despite the cold and wind.

 

 

 

We miss you, Cooper

Love Mom

I wanted to share this

A couple of days before Coopers passing I stumbled across this blog. I want to share this one post because it touched my heart in so many ways. Caution it is a tearjerker…

A Walk In My Shoes

If you were to walk in my shoes, you would feel the joy upon hearing you were having a healthy little girl….the daughter you always dreamed of. You would be fearful as she arrived 6 weeks early, yet elated that she was here. You would enjoy the silence in the middle of the night as you held her and realized what a miracle you had been blessed with.

You would feel the panic begin as what you had hoped was only a virus brought you to the hospital. You would have to sit in fear while you waited for answers. You would feel the world fall out from under you as you heard the words “your daughter has cancer”.

If you were to walk in my shoes, you would pray that your daughter would beat the 30% odds she had at survival….and that she would then beat the 80-90% odds of recurrence.

You would shake as you handed her over to the surgeon in the pre-op room, kissing her goodbye, and praying she would never remember what she was to undergo. Not once, but multiple times. You would pray for the skilled hands of the surgeon and his team, and sweat in an overcrowded waiting room counting the hours as you watched others come and go.

If you walked in my shoes you would sign consent forms that you no longer read because you had signed so many, it no longer mattered. These were the only procedures that would keep you moving forward in your battle. Life was now counted hour by hour.

If you walked in my shoes you wouldn’t just sing lullabies to your child in a rocking chair. You would sing them while she was having a CT scan done in hopes of drowning out the noise, keeping her still, and trying to make her feel safe just hearing your voice.

If you walked in my shoes you would learn how to manoeuvre an IV pole in one hand and your child in the other. You would be proficient with medical terminology and watch as your child was pumped full of poison because this was her only hope at survival. You would become a master at keeping track of blood counts.

You would have to hold your baby as she vomited mucus and bile for days on end…..trying to balance her and change the bed for the third time that day. You would kiss her head and get a nose full of her hair, and have your lips burn because the chemotherapy was releasing from her pores. You would learn to wear gloves when dealing with any of her fluids because they were toxic.

If you walked in my shoes, you would live in a hospital for months at a time, where there is no privacy, sleeping on a worn out couch, and awoken every 4 hours. You would face the wall and cry in silence…wishing it would all be a bad dream. You would look outside the window and realize that life was going on outside of your room, but you weren’t sure how to be a part of it anymore. Your life hung on the edge within four walls.

If you walked in my shoes, you would be ecstatic to be able to take your child home, even just for a few days to try and remember what it was like to have baby in the house. Yet you’d be afraid that a fever would send you running back at lightning speed. You will have become trained with a stethoscope, thermometer, and syringes and have turned your house into a pharmacy and be happy to do so just to have her home. And you would then cry during the entire drive back to the hospital, wishing you never had to take her back.

If you walked in my shoes you would know what it was like to be locked in isolation as you sat with tears streaming down your face thinking that this was not what childhood was supposed to be about….and all the time your baby smiled at you as if to say “it’s okay mummy”.

If you walked in my shoes you would feel the panic as a “code blue” was called on your floor…and you sat and hoped it was no one you knew, and prayed selfishly that it would never be you. You would feel the fear grip you when you received the call at 1:30 am that a code blue had been called and your child had been rushed to the critical care unit. You would be that parent running through the hallway desperate to reach your daughter.

If you walked in my shoes you would see the panic and despair in the doctors’ eyes as they searched desperately for answers to give you as time ran out for your baby. You would feel the helplessness that you could do nothing to save your child, and pray that God would take you instead of them.

If you walked in my shoes you would have to make the horrific decision to take your child off of a ventilator, and then find the courage to utter the words “it’s time” to the doctor. You would have to hold your child as they took their last breath, then say goodbye as you kiss them and hold their hand for the last time.

If you walked in my shoes you would have to find a way to tell your other children that their sister had died, while at the same time trying to put on a brave face and be present to support them as they did their best to understand and cope.

I pray that you never have to walk in my shoes….because only then, will you truly understand.

 

Thanks for reading

Cooper’s mom

Service Information

Here is information for services for Cooper.

His visitation will be tonight, Wednesday the 5th from 6-8pm at Crawford-Bowers Funeral Home in Temple, Texas.

Funeral services will be 11am on Thursday the 6th at Belton Church of Christ, with the processional and burial services immediately following at Bellwood Memorial Park.

Cooper’s obituary, along with photos and a place to write condolences to the family can be found by clicking here.

KCEN, the local NBC affiliate that has been following Cooper’s story did a story on him last night, and has posted it to their website.

Jessica has requested that if anyone would like to make a memorial to Cooper, to donate that to the Neuroblastoma Walk for a Cure.

Thank you again from the family to everyone who has given their time, energy, and love to us. We appreciate each of you.

 

-Aunt Amanda

No More Pain

Cooper lost his battle with cancer today a little past 1pm. He was surrounded by family and friends who love him, and is no longer in pain.

Thank you to everyone whose thoughts and prayers have been with the family during this last year and 3 months. We will be posting his service information as soon as we have that available.

-Aunt Amanda

The worst its ever been

There seems to be no more good news. As of 3:00 this morning they had to move cooper from his transplant recovery room to the ICU. He is no longer able to breath without support. the doctors said it would be best if he was in an induced coma for the next few days. his numbers have gone up and it doesn’t seem like its going to end anytime soon. his latest stats are 7,3 for his bilirubin. We need your prayers more now than ever.

Posted by dad

things seem to be getting a little worse

just a quick update. we received the latest results from cooper’s sonogram this morning and his bilirubin count has gone up to 5.8 from a 3.5  yesterday. He is gaining a lot of weight and the major results from today is his sonogram shows more liver damage. The doctor said that the veins inside his liver are flowing blood in the wrong direction. they weren’t to clear on the extent of damage. but I guess that we will just wait and see what the next few days will bring us.

 

this is the latest picture of coopers stomach. 30" and 50lbs

Transplant and what-nots

After mibg therapy in September, Cooper did another round of the usual tests in addition to a kidney test. His ct scan showed very minimal change. His bma showed no decrease but an increase in the percentage of what was infected. As far as could tell the mibg, radiation therapy, did not show any signs of being effective. His kidney test so that they were working at only 77%. So as a result the doctors were unclear on whether to move forward to transplant. After discussing options with the doctor from San Francisco they decided it was probably best to move forward after all.

On November 9th Cooper was admitted to start his round of chemo. On the 12th, Cooper had his stem cell transplant. All went well. Things were looking really good. Counts had no problems recovering. Cooper did have some trouble with the ng tube though. He ended up throwing it up twice. Finally they just decided to leave it out. Docs said once he started eating and drinking that we would be able to leave the hospital and a week later go home. This was only 2 weeks after transplant. Then after a couple days of not wanting to do either, his stomach started to swell. Two ultrasounds later they are saying its v.o.d. Veno-occlusive disease. Its where there is blockage of veins in the liver. As of today his stomach is pretty large and his biliruben is at 1.4

Hopefully this will be gone sooner rather than later and we will be on our way to have radiation at scott and white. As I know more I will try to continue to update the site. Thank you to all who are praying for our little one.

Bone Disease- late posting…

Sorry its been so long since an update. We have been busy, which I am sure all of you can relate.

Since the last post, we have been back to Cooks several times. Cooper’s stem cells have been harvested. They were looking to collect 10 million and he gave them 12. We have been keeping up with the chemo… no new treatments as of yet.

Up until this past week we thought Cooper was stable. He wasn’t getting worse but he wasn’t improving either. Last week we did an mibg scan at cooks and they found bone disease in his ankles and his arm. The doctors have no idea how long it has been there. Their guess is from the beginning. If that is true then he remains stable. OK, I know you are wondering… how did they not know? That was my response too! At scott and white where the mibgs have always been done the bottom portion of his legs are cut off. He has never had a scam that showed the lower half of his shins and below. So now we have a scan from a different hospital that shows different results.

As far as what they are gonna do about it. We have decided on MIBG therapy. We will be going to San Fransico for this treatment in about 2 weeks. They are expecting us to be there anywhere from 5 to 10 days.

Mom

whats been happening and whats soon to come

Almost two weeks ago Cooper was admitted for the first time at Cooks Childrens Hospital in Ft Worth. He had a conventional course of chemotherapy that lasted five days. Afterwards we were released to go home. We were home for about three to four days when we had to go back to Ft Worth. This time we had transfusions on Thursday and then surgery to put in his aphersis catheter on Friday. Saturday, Cooper ran a low grade fever for most of the day. By late that night his fever slowlybegan to rise. We were admitted and they immediatly began giving him antibiotics. After a few blood cultures and a few days the tests came back negative for any infection. Coops counts were once again low so he had to have another transfusion. The doctors have decided that its best to leave him on the antibiotics and keep us here at the hospial seeing it could be any day now that his counts are high enough to where they can harvest his stem cells.

Friday, Cooper will be having a ct, mibg, and a bone marrow biopsy done. These results will determine whether or not we go to transplant sooner or later. They want him to be clear of all disease before moving on to the next phase of treament. If he is free of disease we will begn transplant within two weeks of harvesting his stem cells, which as I stated beore could be any day now.

I am providing this link to those who would like to read about the harvesting of stem cells and the transplant.

http://www.cancer.gov/cancertopics/factsheet/Therapy/bone-marrow-transplant

Please pray for Cooper to be able to have high enough counts to harvest and that results come back negative so we can soon begin a new tomorrow.

A big thank you goes out to all of our readers!

Mom