A Day in The Life of a Moody Person

Maverick is stable.  He has now had one round of Chemo and one round of Radiation.  Currently his liver has not shrunk in size and is not functioning correctly.  He did finally poop which is wonderful since he has had no bowel sounds since surgery.  They took him off of sedation a few days ago and yesterday took him off the ventilator.  He was off for about an hour and didn't do well breathing on his own.  He was unable to take any deep breaths.  Because of that they reintubated him and thus had to resedate him.  He is now basically on all the same drugs he was on right after surgery.

Megan did get to hold him yesterday which was wonderful.  And she going to insist on holding him everyday even if it does take 30 min to get him out of his bed and all his cords organized.  Please continue to pray.  Pray that his liver would shrink and that it would start to function properly.  Pray for peace and strenghth and comfort for Megan and Ryan.  I can't even imagine how hard this is for them. 
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In other news WE ARE MOVING!!!  I am soooo super excited.  We signed a lease on an apartment.  It's kinda weird and sad to be moving into an apt after owning a house for 10 years.  But I don't really care.  I am quickly learning that less is more.  And any place where we can be a family again is a great place.  Money and big houses and nice cars and name brand clothes and all that junk really doesn't matter.  I have a wonderful husband and a beautiful son and as long as I am in the same place as them I am more happy than I can ever express.

30 Childhood Cancer Facts


1. One in every 330 American children will be diagnosed with cancer before age 20.
2. The average high school has 2 students who are cancer patients or survivors. One in four elementary schools has a child with cancer.

3. Cancer is the leading cause of death by disease in children under the age of 15 in the US.

4. The causes of most childhood cancers are unknown. It can not be prevented.(Many adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents)

5. On average, 36 children in the US are diagnosed each day with cancer.

6. Childhood cancer occurs regularly, randomly and spares no ethnic group, socioeconomic class or geographic region. In the US, the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65.

7. Childhood cancer research is vastly and consistently underfunded.

8. Chemotherapy was first shown to be effective in childhood cancer.

9. The discovery of the first tumor suppressor gene occurred in children with cancer.

10. The National Cancer Institute’s budget is $4.8 Billion. The total for all grants related to childhood cancer is $173 Million. That’s only 3.6% of the federal governments cancer budget. Aren’t our kids worth more than that?

11. Some types of childhood leukemia have survival rates over 90%. Some types of brain tumors have a 0% survival rate. If it’s your child, it’s either 0 or 100%. Anything else means nothing.

12. Overall, nearly 80% of children diagnosed with cancer survive. While 80% on a test is pretty good, the deaths of one out of every 5 children diagnosed is not.

13. Two-thirds of children who are cured of cancer in childhood end up with at least one long-term health problem arising from their treatment. One-third have severe complications such as mental retardation, lung damage or congestive heart failure. In all, they are four times as likely to have serious health problems as their siblings.

14. The Children’s Oncology Group/CureSearch is an NCI funded pediatric cancer research cooperative group. They treat over 90% of US kids diagnosed with cancer. St. Jude’s Research Hospital has a world class public relations dept, and they do excellent research, but they don’t treat nearly as many kids as CureSearch-COG doctors do.

15. 10,400 children are diagnosed with cancer every year. 2,000 of them die each year.

16. Become a regular blood donor. Kids in cancer treatment often need blood products.

17. Over the past 20 years, there has been an increase in the overall rate of childhood cancer.

18. Leukemias and brain tumors are the most common types of childhood cancer accounting for more than half of all diagnoses.

19. There is no “good” cancer. Never, ever say this to a parent.

20. Treatment for the most common types of leukemia goes on for over 3 years. Most adult cancer treatment is counted in months.

21. Just because a child’s hair has grown back, does not mean that treatment is over.

22. Adolescents and young adults have a higher rate of survival when treated on pediatric treatment plans compared to adult plans.

23. Cancer is not contagious.

24. Children in treatment often have lowered immune systems and can’t fight off simple germs like colds and flu. Stay away if you’re sick.

25. Childhood cancer effects the whole family. If you can, befriend a sibling-they could use the attention and support.

26. Research is the only hope for finding a cure for childhood cancer.

27. What not to say to a parent: What did you do to cause the cancer? Have you tried (fill-in-the-blank herbal cure)? I don’t know how you do it-I could never handle it. (real quotes)

28. A parent may have a smile on their face as they talk to you, but that doesn't mean they don't cry in the night, it only means that they are trying to make you comfortable so that you will keep talking to them. Families in cancer treatment become very isolated. After a while, they stop telling you how their child really is when you ask, because they learn that people want to hear “fine” and move on.

29. Send jokes to the family effected by cancer. Nobody needs to laugh more than someone hanging out on a kids cancer ward.

30. If your child is a friend of a child with cancer, encourage that friendship. Kids with cancer miss a lot of school and need friends to keep them connected.
 
copied from http://dccandlelighters.blogspot.com/2010/09/september-is-childhood-cancer-month.html

I have been spending a LOT of time at the hospital this week.  I am so extrememly thankful that I have two wonderful grandmothers that are willing to watch Kai for me so I can be there for Megan.  I don't realize how being there all day is so exhausting until I get home and crash.  It's like I have to be on all the time so I can do whatever it is that she needs me to do. 

This whole thing with Megan's sister dying and now Maverick being so sick has really given me some perspective.  All the "important" stuff and all the stuff I worry about really isn't that big of a deal.  Life is just so short and so fragile. 

I sent meg a message telling her that no one else besides God can help her through this time.  And it is true and something I need to keep reminding myself about.  I can't tell her that Maverick is going to be ok because I truly don't know the answer to that question...no on does.  But I can tell her that God is there and that He loves her unconditionally and more than she will ever know.  And that when she weeps he catches her tears and He weeps with her.  That He knows what it is like for her to see her son suffer.  That He understands the pain in her heart.  That He has His arms wrapped around her as tight as He can.  That He is the only constant thing in this world and truly the only thing that she can count on.

Maverick is doing very well.  Surgery was good. They removed the whole mass on his adrenal gland, which is wonderful.  They put a port in for chemo and did a bone biopsy.

Preliminary pathology results showed the mass is a neuroblastoma and it is what the dr's were thinking it was, which is also good.  The bone marrow pathology came back clear.  So good news all around.

They are keeping him sedated and have him on a respirator.  Since he was so symptomatic they decided to start the chemo today.  He got two kinds today and will get one tomorrow and one on thursday.  They said he will plateau for a few days and then start to show signs of improvement.  They said the cancer grows fast but it also dies fast, so that's good news.

He did great with the chemo.  No side effects so far.  The biggest concern is how large the liver is.  It is currently so large, basically the size of an adult liver, that it is putting lots of pressure on other organs and making breathing hard.  The chemo should start shrinking the liver within the next few days.

I'll keep you all updated.  Just keep praying for him and the family.

Here is his caringbridge site if you want to keep updated on everything.

I was at the hospital today.  I was at that same hospital exactly 4 weeks ago to witness the birth of my godson.  That was a very good day.

Today was not a good day.  My 4 week old godson has been diagnosed with a neuroblastoma.  It is on his adrenal gland and spread to his liver.  Today they ran all sorts of tests.  The poor thing was hooked up to IV's, catherter, pulse ox.  Tomorrow he will have surgery.  They will definately do a biopsy and hopefully be able to remove the tumor also.  Within the week he should be starting chemo.

My mind just feels like it's full of water and it is floating.  I just cannot believe that this is happening.  That this poor little boy and his mother and father and sister and the rest of his family have to go through all of this.  I am just trying to stay strong for M during all of this.

Oh and yes this is the same friend whose sister was murded exactly a week ago...raining...pouring...

I am currently suffering from the worst headache I have had in the last 16 years.  I say 16 years because when I was 15 I was plagued by a never ending headache for over a month.  I went to bed with it every night and it was there waiting for me every morning.  It finally got so bad that I had my boyfriend take me home early one night and I cried to my mother that I couldn't take it anymore.  So we went to the pediatrician who didn't know what it was and referred us to an ENT.  They thought it was a sinus infection so they gave me meds and nothing happend.  After that we went to a neurologist and he did all kinds of weird tests, and cat scans and MRI's all to know avail.  There were no answers for my chronic headaches.  He gave me meds that I took daily to keep the headache at bay and they would work for a few months and then we would change to another one.  This went on for over a year until I finally ran out of options and he just gave me some super pain killers to take as needed.  I realized that headaches would be a part of my life and I learned to manage them and go on with my life.

It wasn't until 7 years ago that a dr. finally figured out the cause of my headaches...TMJ.  I knew I had TMJ because that same year at age 15 I went days without being able to open my mouth.  After that I was left with a popping jaw that I was only able to open so far before the pain set in.  (why no one, including myself, thought the two were connected, I'll never know)  The problem with TMJ is getting insurance to pay for any procedures.  Medical says it's a dental issue and dental says it's a medical issue.  Thus I am still plagued my painful jaw and my chronic headaches.

But this headache is totally different. The pain is in my forehead and behind my eyes.  It hurts to move my eyes from side to side.  Looking at this screen is killing me.  My mom thinks this headache is my bodies way of reacting to the grief, both physical and emotional.  I have not been sleeping well at all, and my brain never shuts off...constantly thinking about what happened and M's poor family.

There was a rosary service on tuesday with an open casket.  It was awful. She didn't look like herself.  I know the funeral home people did the best they could since there was considerable head, face and neck damage done.  Her poor children just stood there looking at her.  I cannot even fathom what it must be like to look down and see your mother lying there.  My heart is just so broken. 

The funeral was yesterday and burial was today.  I didn't go to the burial because it was out of town.  I think my body knew I was done being there for M physically for a while so it took this time for me to feel all that is going on inside of me.  And I can take it.  I'm a big girl who has dealt with more physical and emotional pain than I would ever like.

But this headache better find it's way out the door by 6 tomorrow morning.  I have to go to M's house to get her daughter ready and off to school.  She has to be at the hospital at 6:30 for an MRI for her 3 week old son.  They found out tuesday that he has a mass on his adrenal gland.  As if tragically losing her sister wasn't enough...

I haven't seen M today.  She is with her family.  I am terribly worried about her.  She hadn't been sleeping because of the new baby.  I may force myself over to her house so I can watch him while she sleeps tonight.

Today was my first day of school.  All  my classes are online except one, which incidently I will miss because it is the day of the burial.  I took my first quiz and made a 100 so that's good.  I have been trying to keep myself busy with school and Kai.  But I can only do that for so long and then my mind wanders back to it all. 

I still really can't believe that it is true.  That she is really gone and that her husband took her life.  That 4 kids are left with no mother or father.  That this family will have a huge, gaping hole in it where a wonderful women once was. 

It's just so wrong on so many levels...