Tuesday, June 23, 2009

No clever title here

Yesterday was pretty uneventful. Xavian had the feeding tube put back in. Matt had to be with him then because I was still on my way here with Dante. He then slept pretty much all day. He hasn't had morphine since 10 am, yesterday. Still won't eat. Still throwing up. They actually decided to turn his feeds off during the night. Once they turned them off he stopped vomiting. It is still hard to sleep though because every time he starts coughing he then gags. I then jump out of bed to make sure he's not throwing up. I think he is having to get used to the TP tube all over again. This one is actually bigger than the one he had last time. They weighed him last night too and it seems that he has lost a little weight. Considering this is the third round of chemo and he hasn't lost any weight up until now, we're lucky. I am just afraid that he will forget how to actually eat from a bottle. He is sucking on his paci like crazy though. Maybe that will help. He will be seven months tomorrow and hasn't even started baby cereal yet! Arggg! STUPID cancer! STUPID chemo drugs! It seems that when he gets better and his counts come up he gains a few mile stones only to get sick again and slide back. It's all very frustrating...

I spoke to one of the doctors this morning and they are probably going to just turn his feed on really low and leave it there all day, instead of turning it up by 5mL every four hours. Hopefully this will keep the vomiting at bay. I had a lot of breast milk stored up from the times I had to pump in the past. I'm using that for the feeds in hopes that will get his counts up quicker. Who knows...breast is best, right?

Please pray that Xavian will begin either eating from a bottle or at least tolerating his feeds. He really needs the nutrition. Pray his body will start making bone marrow again, his numbers need to come up so we can go home. Pray for Matt as he is going back and forth from work, the hospital and home with Dante. Pray for Dante. I think all this is starting to wear on him too. He is always asking for "baby brother". Oh yea, Xavian is getting blood today and probably platelets tomorrow. So, thanks to all those that donate. Those that don't and could, you should. Take a look at this link below and do what you can to help us and all our "c" friends.

I found this site on another CB and find it very interesting...


Our Current Strategy

"When I despair, I remember that all through this the ways of truth and love have always won. There have been tyrants, and murderers, and for a time they can seem invincible, but in the end they always fall. Think of it--always." –Author Unknown

  • Swine Flu 2009: 15 confirmed U.S. deaths as of June 1, 2009 at 2:41 PM
  • Childhood Cancer 2008: OVER 3,000 children dead in the U.S.
  • Swine Flu Government Funding: OVER $1.5 BILLION
  • Childhood Cancer Act Government Funding: $150 MILLION in funding spread over 5 years

Stand Up 2 Cancer Awards $73.6 million to 5 Dream Teams

Thank you to Brenda Everson-Wiesman (TEAM DREW W) for the article below!

The five Dream Teams are: Epigenetic Therapy, Women's Cancers, Breast Cancer,Tumor Cells Chip, and Pancreatic Cancer. No mention of childhood cancer as of yet except possible pediatric innovative research grants to be awarded later. Things we can do:

1. Go to http://www.standup2cancer.org and read the announcement about the Dream Teams being awarded the money recently. Log in a comment.

2. On the same site, go to the "Magazine" and then the SU2C blog and leave a comment for Lisa Paulsen who wrote "Outpouring of Support Gives Hope Against Cancer." Lisa is the President and CEO of the Entertainment Industry Foundation (EIF). Ask for children's cancers to get their own show like I did if SU2C is not going to give pediatric cancers much funding.

3.Go to the American Association of Cancer Research site at www.aacr.org and use the "contact us" button to email this group who is the scientific arm of SU2C. Ask why pediatric cancer was not included in one of the Dream Teams.

4. Go to http://www.cbsnews.com and email Katie Couric under Couric and Co. about the need for special reporting about how childhood cancer is only receiving 3% of the research funding. Katie is also on the executive board of SU2C.

5. On the Katie Couric site you can add a comment to her story "Disparity in Cancer Research Funding." Pediatric cancer was not listed but breast cancer was listed as one of the ones getting the most research money. Of course we all want to see an end to breast cancers and all cancers but... we want more money for the childhood cancers which are under funded.

6. If anyone has any contacts to the SU2C show, you could ask them why pediatric cancer was not included when the stories and photos of the kids were used. Also the team Crushing Kids Cancer raised $47,000 for the show and was the top team.

7. Any other suggestions welcome. I know some of this is a re posting of earlier items this week but I feel that it deserves it's own discussion as the earlier info was not clear, my fault.

8. SU2C just announced a new bunch of celebrities to help the cause. Sounds like a new show might be in the works. Maybe in Sept. again? How can we get them more involved with our cause? Can we get them to join PAC2 (ED: or Team Unite)? Can they say that Sept. is childhood cancer awareness month on the show? Will they be contacting parents of kids fighting cancer and if so, what should be our response? Ideas?


September is Childhood Cancer Awareness Month and September 13th is Childhood Cancer Awareness DAY!!! HELP US IN OUR UNIFIED EFFORT TO CONQUER CHILDHOOD CANCER. in the words of our own, TEAM ALEXA - “CANCER, YOU'RE FIRED!!!”

Anyone can help promote childhood cancer awareness and research. Do you have success stories of how you’ve made a difference? Please share your ideas on how to get the word out that September is Childhood Cancer Awareness Month and that the 13th is Childhood Cancer Awareness Day. Join us in our unified effort. Together we can raise awareness for September and of course; AWARENESS = FUNDING for RESEARCH = A CURE!!!!


Start by wearing a gold ribbon or awareness gear yourself! Anyone with ribbon, scissors and glue can make them or you can order them on line. Better yet, organize a group of volunteers to make gold ribbons that can then be handed out at events with a flier attached stating the reason to wear the gold ribbon (symbol for childhood cancer).

Please share any gold ribbon designs or campaigns you have created on our board at http://teamunite.net/forum/or by email to admin@teamunite.net.

If you need a source for September gear, please visit www.cafepress.com/teamunite today to order your childhood cancer awareness items! Please note that Team Unite is not a fund raising group. We give 100% of the proceeds from the sale of the September gear to support childhood cancer awareness campaigns.

Please share information and news. Did you hear a story on the news or read something on line or in print? Please share that information at http://teamunite.net/forum/. We need to know who out there is helping promote childhood cancer research by airing or writing stories having to do with our fight! As a unified group we must each reach out and thank these people and encourage more coverage!

1 comment:

  1. I'm so sorry to hear the little guy is not doing so well. I want you to know that God has really laid it upon my heart to pray for him and all of you often. My His comfort be with you.