Tuesday, February 27, 2007

What it's like to have a child with cancer......

I found this on another site and think it says how all the other Mothers feel just before test day.

Written by a Mother of two children Fighting with Cancer.

What its like to have a child with cancer

Picture your child sitting in the middle of the street

Picture yourself in your home watching your child from the window.

Everything inside you wants to reach out and save them

But you can't get out, all you can do is watch and pray that God is watching over them

You see them fall and cry for you to make it all better

But you can't get to them, they can see you and see your tears

And maybe hear your voice through all their tears.

You pray God will keep them safe.

You hear a car in the distance, but never know how far away it is, some days it seems really close other days even closer.

You know that at an moment that car may come and change your world all over again, in a split second you can be back to were you were when this all started or worse yet, the fight may be over.

Some days you start to feel a little more safe and back up from that window, walk over to the coach and sit down, when just then you hear that car again and in a second you are one with that window again, all those fears you tried so hard to put aside are back, more intense this time, feeling guilty for having let your guard down.

It makes leaving that window the next time that much harder.

We want to keep them close at all times for fear of the unthinkable.

At night when you leave their side to go to bed, you take one more quick peek at them to make sure all is well.

You lay in your bed hoping to see them tomorrow, not wanting that day to end, for as hard as it was that day they are here with you, and tomorrow is filled with the unknown, every day, night after night these are our fears.

We are exhausted in every way.

Our prayers from one night would fill God's book a million times over.

All you can do is pray to God to spare them, let them be safe.From that window you see the fear in their eyes, their hopes of the future, such a small child sitting their all alone, surrounded by love, but alone, fighting so hard, not wanting to let you down, for they are very smart, they know our sorrows.

Seeing your child sit there, wanting to help with all your might, But knowing in the end its them and their bodies that must do all the work, so much to ask of such a little person.

You'd never let your child sit there in the street, knowing that they could be taken from you at any moment, you would not just sit there and stare at them and pray to God to save them, you would pick them up, wrap your arms around them and hold them forever, keeping them safe.

Yet that is what us parents of children with cancer are asked to do every day.

Let them sit there and watch and wait and pray, pray hard.

Yes, I believe in God, but that doesn't stop my mother instincts to want to do something to help them.

How do we put everything we learned as parents aside, and simply hand it all over to God?

How is it decided which child shall live and which child will pass on?

Why is it that some children struggle so very hard and win their battle only to have it return with much more vengeance?

Why do some children sail right through their treatment and then die suddenly?

How are we to make sense of any of this?

With each clinic appt. brings the possibility of a relapse, no matter how great they look or how wonderful they feel.

If only we could judge their health by the way they look on the outside.

We are supposed to protect them, to keep them safe from harm, who said cancer could make all the calls?

I never agreed to that, I am their mother and I will fight for them, with every ounce of my being.

Cancer may be calling the shots, but it will not win this game, not with my children, not with any of our children, we are so very weak, but so very strong, this bravery we have we get from our children, our little heroes, fighting every day with all their might.

Pray for them.

Monday, February 19, 2007

awww! The Joys of Teething....

I hope everyone had a Wonderful weekend.

Saturday here was Gorgeous! I think they said it was around 80 degrees. Not a cloud in the sky on Saturday. It was just Perfect!

We took the initiative to go and take the time to wash and detail our car ourselves. I must say, it was a lot of fun. We got out there early, put little David in his play yard with some toys in the garage out of the sun while the car was in the driveway getting it's WELL deserved bath. Isabella rode around on her cute little Disney Princess Tricycle. Okay, don't ask why we got her a tricycle when she's big enough to be on a bike now.... Well, let's just say it took her a while to get down the use of the pedals on the tricycle she already had. We had taken her to ToysRUs on numerous occasions and put her on the bikes and she just couldn't get it going. Then one day we put her on this tricycle at ToysRUS and she rode around the store like a pro ringing the little bell on the handle and having a lot of fun. This tricycle is for 18 months to 4 years old. She will be 4 in April. =)

Here is a picture of what it looks like. I think it's the cutest little trike....

Now since the pedals are on the front wheel, she has to pedal a lot just to get 10 feet. So she gets tired pretty fast on this thing. But I couldn't resist it as a gift for her for Christmas. She won't get much use out of it because her legs are so darn long and she'll probably get a new one for her birthday. But I'm still glad we got it. =)

This trike is really good for when your child can't reach the pedals yet. They can put there little feet on the bars under the seat and you (the parent) can push them around. It would have been a really good thing to buy like 2 years ago! hehehe

After she's done with it, I'll give it away to someone else who can really use it. Which she'll be done with it in a couple of months. =)

BTW... I searched for it online and I guess they Discontinued it. That really sucks because I was reading the reviews and every single one of the parents that bought it, loved it. How come that is always the case??? When ever you find something you like, they stop making it?

Well, anyways.... back to the title of this post. Saturday our little man was as happy as can be. Then Sunday morning everything seemed okay but as the day went on we noticed he started to get really cranky and then I started to feel that he was getting hot. He got to the point where he just wanted to sleep and he relaxed better if one of us would rub or pat him on his back while he tried to sleep. By tried, I mean he just couldn't get comfortable. He would be on his stomach and would be rubbing his face into the blankets while he gave us this soft little moan and with that you knew he wasn't feeling well. His fever started to get a little higher and so we stripped him down and put some cold wash clothes on his forehead and gave him some infant Tylenol.

I had a feeling about what was causing his discomfort..... I looked at his bottom gums and there it was... his little tiny tooth was peaking out of his gums. I barely had a second to look before he had my finger in there trying to gnaw on it. I could barely feel his sharp little tooth on my finger, but this had to be the reason why he was so fussy and so different from the day before. I looked online for teething symptoms and all the symptoms were pretty much what he was going through. I called a friend of mine who has a daughter that is like 2 months older than little David and she told me that she went through the same thing when her first two teeth popped up. It was like she had a cold for a couple of days and I said EXACTLY! =) He has a runny nose, a little cough, the fever and it all came on in one day.

I guess I just don't remember Isabella going though her teething process like this, but I know every child is different. =) It's time to go pick up some Oragel on the way home tonight from work. I hope the teeth come in far enough for me to get a good enough picture for everyone.

The days of my gummy smiles are numbered....... ***tears****

Wednesday, February 14, 2007

Searching for Jackie Hartman

On January 28th 2007 a young woman by the name of Jackie Hartman went missing.

Her family set up a blog site here is the link to her site : Finding Jackie Hartman

She went missing on Jan 28 and then the police found her clothes in a dumpster at an apartment complex in Chandler, Arizona. A 25 year old man named Jonathan Burns lived at that apartment complex and he states he was with her the night she disappeared. He has since been arrested and for right now is only accused of sexual assault. From police reports, it shows that there were holes in her shirt that tests showed were from a gunshot and another test showed that there was blood.

The family is desperately searching the Gilbert area, Jakes Corner, Highway 87, the Four Peaks area and this weekend they have been given permission to search the Indian Reservation. They are need of volunteers to help them in the search of this young woman.

If you live in the Phoenix area, please step up if you can and help out. She has been missing for over two weeks now and as each day passes hope for finding her alive diminish.

Also an account has been set up at Bank of America for the Hartman family - you can make donations to the "Jackie Hartman Fund" at any Bank of America branch. You can donate cash, or make checks out to the Jackie Hartman Fund.

Friday, February 09, 2007

Penelope London

I wanted to post today about this sweet little girl that I don't personally know, but I know of her because her parents are apart of my N-BLAST support group for Neuroblastoma (NB).

She was diagnosed with stage IV NB on November 14th, 2003 when she was 16 months old. Stage IV is the worst diagnosis you can get with NB. She has relapsed and is going through experimental treatments which include oral and IV chemotherapy.

She is currently 4 years old and is trying her hardest to battle this horrible disease. Her parents, Catherine and John have posted emails about the status of their beautiful little girl and unfortunately she is not doing very well. I wanted to share her story with you all because she needs as many prayers as possible during this tough time.

Here is a link to her Caringbridge site where you can read the posts from her parents. It was just recently updated today. You can also read previous entries on the "read journal history" link at the top of the page. You can also leave comments on the guestbook page.

Penelope Jane London

It just breaks my heart to see another child suffering from NB. Especially since at Isabella's last appointment we were discussing NB with her oncologist and from one appointment to the next it seemed like he lost all hope in finding a cure for it. Or at least finding a treatment plan that will work on these kids. We asked him about getting little David checked out, just so we could be sure that there was nothing to worry about. But the doctor told us it would be pointless because even if he did, they wouldn't do anything about it. They have changed the protocol when a baby is diagnosed under the age of one. When a baby is under one year of age and is diagnosed with NB, they just take a wait and see approach. Which is fine, but the last time we had spoken to Isabella's doctor regarding NB, he seemed very upbeat and positive about making advances in treatment and diagnosis. He told us with NB it's not like breast cancer where the earlier you find it, the better off you'll be. With NB, it's all about the biology of the tumor. We got extremely lucky and Isabella's tumor had good biology; meaning the tumor would respond well to chemotherapy treatments.

The tests to determine if you have good biology are:

Tumor histology: Describes the appearance of the tumor cells under the microscope. A tumor is described as having either "favorable" or "unfavorable" histology depending on how active the cells look. Tumors with unfavorable histology tend to behave more aggressively.

****Isabella had favorable histology

Tumor MYCN status: MYCN is a gene that regulates tumor cell growth. Tumor cells can have a single copy or multiple copies of this gene (called MYCN amplification). Tumors with MYCN amplification tend to behave more aggressively.

*****Isabella had MYCN non-amplified

Tumor DNA index (also called ploidy): Describes the number of chromosomes in the tumor cells, compared to the number in normal cells. Sometimes a DNA index tells us that a child needs more chemotherapy, especially in infants.

*****I'm not sure how new this test is, but I don't remember them giving us the results on this.

There was another part of the diagnosis that I can't find the definition online, but it is called Shimada. You can have unfavorable or favorable Shimada and Isabella had favorable Shimada when her tumor was tested. So all of these good tests made it so her tumor would respond well to the treatment plan. We were VERY lucky.

Most kids are diagnosed with high-risk stage IV NB and they will have unfavorable Shimada and MYCN amplified. Once they get the high risk diagnosis, they go through much higher doses of chemo, radiation and stem cell transplants. What these kids go through and they are still able to put smiles on their face and run and play is amazing.

I would like to take this time to say that CANCER SUCKS! NB is a horrible beast and it is taking away too many kids from their parents. Parents who won't see their daughters get married or have their first prom date. Parents who won't have the joys of seeing their sons grow up to be young men. All of the firsts that these parents won't have is heart breaking and I only wish there was more that could be done with the fight against NB.

Please remember to stop by Penelope's site and say a prayer for this beautiful little girl.

Sorry for the long delay...

Happy Friday everyone!

Our house is almost getting back to normal. I am starting to feel a little better day by day. But I still wake up in the middle of the night with coughing attacks. Last night David got up and left to the guest room because he couldn't sleep with my coughing. I felt really bad.

Isabella has the same cough as me, she just coughs a little every now and then. David got lucky on the cough and didn't end up getting it. Hopefully we will be getting rid of this stupid bug. =)

Little David is sleeping throughout the night again after being sick for almost a week and a half. He scared me this morning when I went to get him up to be changed and feed before we left for daycare. I went to his crib to get him up and I saw that he was laying on his stomach with his face pointed down into the matress. I freaked for like a second thinking of SIDS, but then I put my hand on his back and he was breathing. So I left out a sigh of releif and right as I did that he turned his head to the side. He usually never sleeps on his stomach so it caught me by surprise. He is still a little sick like Isabella and I, he has the cough every now and then. But it gets frustrating when he coughs because he will cough so hard it will make him gag and throw up his bottle if he had just ate. Not fun! You don't know how many times I've had to do laundry or clean my carpets becauase the entire bottle would come back up.

More to come, but I've got to run to lunch now. =)

Monday, February 05, 2007

What is your favorite commercial?

Hey guys! I thought I would post some of my favorite commercials from Sunday's game. Sorry that there isn't much to report yet. We are all STILL sick. I just wish I would start feeling better....

Here are my favorite :

Thursday, February 01, 2007

When it Rains..... IT POURS!!!

Good afternoon to my fellow readers....

I am so very sorry that I haven't been around for more than a week. I know you all love those pictures of little David so I didn't want to bump them down! hehehe

Okay, so Isabella was the first to get sick in our house early last week. It wasn't too bad, just a runny nose and a little cough. Something that she always seems to have. Then little David got a bug so we took him to the doctors on Thursday and she said he had an ear infection and some congestion. So now he is has been on antibiotics since last Friday and I give him some medicine for a little cough and runny nose when ever I feel like he needs it. On Saturday, I felt perfectly fine.... I went to sleep a little early Saturday night and woke up in the middle of the night sweating. "DAMN IT!" I said. I have the flu! My fever got up to 103 on Sunday and my body ached like there was no tomorrow. So there I was, trying to get some rest so I would be okay on Monday for work. I went into work on Monday but I felt so horrible and I just wanted to sleep. I ended up staying home on Tuesday and that's when I noticed Isabella's eyes were red and she had "gunk" coming out of the corners of her eyes. I just kept wiping it away and more would keep coming back. I didn't know what was going on with her now, but when she woke up on Wednesday her eyes were better so I took her back to daycare.

THEN.... when we come to drop our little kiddos off at daycare today, we find out that Pink eye has made it's rounds around the daycare center. Our daycare provider told us that Isabella could not stay if she had Pink Eye since it is so very contagious. And there we go again to the doctors office. Our 3rd trip in the last 2 weeks! They are getting a lot of money from us! So David takes our little Bella to the doctors office, she tells him that it's NOT Pink Eye but she does have an infection. Not just in her eye, she has a sinus infection and a ear infection. The doctor said something like our whole face is connected under the skin so it's not hard to get infections passed to other areas like that.

And to top it off, David is sick. So, no visitors to our house until we disinfect the whole darn house!! hehehe

Here is a breakdown of our ailments:
Me - The Flu - now chest congestion and cough
David - chest congestion and cough
Isabella - Ear, eye and sinus infections.... constant runny nose and cough
Little David - ear infection and a little cough and runny nose