Eli is in the paper....here is the link...

http://www.thedanielislandnews.com/artman/publish/article_2628.php

Maria

Nothing new today....we went to the aquarium and had a good time.

Beth Bush did an amazing job in the Daniel Island News with the article on Eli!!! Thank you Beth!! If you can, run and pick up a copy. I hope it helps people think about Childhood Cancer a little more, and maybe even get more people involved.

Here are some pics from the our hospital stay. My favorite is the one of the boys together....Eli has such a good time with his brothers, no matter where he is!!! I thought it would be appropriate to include a pic of Eli with one of his favorite nurses, Niki, who I have mentioned here before. The last is where Eli fell fast asleep one day while we were on a walk!!!

Eli's counts today were:

ANC 2047 (Yea, in the normal range for a while!!)
Hemoglobin 10.4
Platelets 447

The MRI went fine this morning. I went in early so the "experts" in the clinic could access his port before the MRI. Then we went down to have the scan done, came back upstairs to see the dr, and went home. Pretty uneventful day. The results from the MRI will probably be in tomorrow, but it really isn't something I am too worried about right now. The dr said we could discontinue 2 of Eli's meds, so that is a good thing.

I promised Eli we could go to the beach this weekend. He has been wanting to go, but I wanted to wait until those counts came up a bit. The dr said it would be fine. John is planning to watch the Clemson game on Sat afternoon, so maybe we can go after that. I really want to get out and do as much as we can. It has been so long since we got to enjoy the world.....

I went by 7B to pick up our phone charger that was left in the haste to leave the hospital, and I was talking to one of our favorite nurses. She said she has been doing this for a while and she can't remember it being so hard--with new diagnoses and kids not doing well during treatment. (There have been more than a few deaths this summer) Please pray for these nurses, and those that work in the clinic as well. As I have said before, these are the women that take care of these kids day in and day out. It is so hard for them, and as a parent I know there is no way I could not have made it without them being there for me and Eli. Please pray that God give them the strength that they need during this rough time and give them the vision to see the difference that they are making in people's lives every day.

I think we will go to the aquarium tomorrow. Since we got our clinic visit out of the way we are home free until Thursday of next week...

Thanks for checking in...

Maria

I am thankful for all oncology nurses everywhere and the wonderful job that they do.

The weekend went pretty well...our marathon Saturday was long. John ended up going to all of the games, and I went home with Eli. The steroids he is on are definitely effecting his mood. I was hoping that they wouldn't effect him until day 4 or 5, but he has been really clingy since day 2. But today is the last day of steroids for this month...yea!! Now we just have to get used to how these moods and stuff go on a month-in, month-out basis.

We will go into the hospital on Wednesday for another MRI. They will take a look at the brain lesions and see if there has been any change. This will also be our baseline as we try the Intrathecal Methotrexate at his next Lumbar Puncture next month. As I have said before, this is a really good drug and we haven't given it to him in the spine(we have substituted another drug) since he seized on Jan 13...so we will try it again now that he isn't on such a tough chemo regimen and see what happens.

John and I have been married 13 years today...WOW. He got his mom to come watch the boys tonight and we went out to Sienna for a nice dinner...YUM.

Thanks for checking in. I will let you know how the MRI goes.

Maria

I am thankful for my husband and my marriage. I don't know how someone would go through this without a supportive and wonderful partner...

Today Eli's counts were:

Hemoglobin 10.4
Platelets 556
ANC 1276 (Yea, thanks for all of the prayers!!)


We are OFFICIALLY in Long Term Maintenance!! Eli was able to get his LP today and get things started with the chemo. It was a really short clinic visit, we were our of there by 12noon...Again, we are on like 10 different meds a day, but at least it is all at home.

The Daniel Island News is going to write a story about Childhood Cancer Awareness Month....Beth Bush came to the clinic and visited with us for a while. I think it is great that they are willing to help make more people aware that we really need to find a cure!!! I will put the link up when the article comes out.

Jacob and Sam both had football games today. It was really nice to be able to take Eli and chase him around like a "normal" two year old. He still has lots of energy and is handling everything so well. It is amazing watching them play football...when did they get so big?

A young girl, Rachel, is in the hospital finishing her last treatment. Way to go!! Please pray for the parents of another little one, Morgan, who is not doing well. I know I have said it before, but it is so HARD to be in this world where I see so many little ones suffering....

Thanks for checking in.

Maria
www.active.com/donate/tntsc/elisteam
Give so we can find a cure!!


I am thankful that today went so smoothly. Although we have been through so many before, it is still great when these "procedures" go well.

Here is a pic of Eli and I at church on Sunday.....Thanks Robin!!

Jennifer and I walked the bridge (or half of it) yesterday....I now know just how much I need to walk before Feb!!!!

I will catch everyone up tomorrow.

Maria

The rollercoaster continues!! Sigh!!

Eli's counts today were:

Hemoglobin 10.2
Platelets 486
ANC 450 (No..that is not a typo. And yes, we did make them check it twice)

SOOOO, after being NPO (nothing to eat or drink at all) since midnight last night, we were finally given the ok to eat at about noon...with no procedure. The guidelines of the study that were are on are very specific that he MUST be at an ANC of 750 or greater to start a new round of chemo. So we will go back on Thursday and see where we go from here. As one of the nurses said, Eli never does it the easy way...

I am very relieved that we did the BMA last week to rule out relapse, I think I would be really scared right now otherwise. He may be brewing some little infection or it may just be recovering from the past 8 months. But I did talk to the doc about taking Eli off of some meds (his anti seizure, and the anti fungal) So we won't have to take quite so many in the next month or so.

Our nurse practicioner lost her husband last month very unexpectedly and I was asking her how she was. She told me it was day to day, but she really doesn't know where she would be without her church family. I told her I had wondered the same thing, how does someone go through something like that without that support and those prayers? I told her that it was my church family that helped me get back to standing after we were diagnosed, and I cannot imagine it without them even now. Now why can't people see that stuff when they see Christians instead of all of the negative bullsh-t? Just a thought....

Thanks for checking in....please pray for us as we go back to Clinic on Thursday for a repeat of today,..,...

Maria

I am thankful for my friend Annnie, who is coming from Denver in Feb to walk in the half marathon with us. It is amazing how true friendship overcomes miles in a way nothing else can.....thanks for being there for me....

For the first time since New Year's Day....The ENTIRE Crowley Family was at church TOGETHER!!!!!

What a momentous occasion. Eli really enjoyed himself, dancing in the aisles no less. John was an usher, so we didn't get to sit together....but we were all there!!!

The week has been fine. Eli and I went into the clinic on Friday morning just to check his counts for the weekend. This is not something I like to do (I don't like to be there any more than we have to.) but after the roller coaster that was the past few weeks, I was really wanting to know the numbers to plan the weekend. I took Eli to the aquarium first so he didn't mind going...especially when I told him it was just a finger poke. My little guy has gotten so "old" so fast. When I tell Jacob he is getting a poke he RUNS the other way.

Eli's ANC was 1497
Platelets were 427
Hempglobin 9.8

Our clinic day is tomorrow. Eli will get a LP (Lumbar Puncture) with chemo, IV of Vincristine chemo and start on a five day pulse of steroids. Please pray that Eli continues to do well with the chemo.

Thanks for checking in.

Maria

I am thankful for getting to to to church as a family. Eli misses his church family, you could see the joy in his face as he played!!

I am so glad to say that I have NO idea what Eli's counts are today.

We had a lazy day once the older boys went to school. I think we were both just enjoying being home. We went out for a little bit, and I told him that we have to start walking or bike riding in the mornings tomorrow...I have a half marathon to complete in Feb!!!

John is out of town. I think it really bummed him out to leave as soon as we get home, but he will be back tomorrow. He is taking Jacob and Sam to Clemson this weekend for the Furman game. An old friend of mine, Darrell, was really great and let us have his tickets. That should be great for all of them. Hopefully we will all be able to go to a game later in the year. I was thinking maybe Homecoming, but we will see how the counts go from here on.

Going through the boys bookbags I realized how removed I have been since they began school. I really had no idea what was going on. Between my mom and John things are fine, but as a mom I like to have my finger on the button...

Please continue to pray for my brother in law, Paul. It looks as though he has a twisted intestine and he may have to have surgery if it doesn't resolve itself by tomorrow.

Thanks for checking in.

Maria

I am thankful for the beautiful weather we have had. I am actually getting to go out in it!! Although it has been warm, it has been great just the same.

WE ARE HOME!!!!!

Eli's counts today were:

ANC 411 (WOW...up from 173 yesterday)
Platelets 186 (Normal)
Hemoglobin 9.8

Today was a great day, although very tiring. Eli had his CT scan this morning to look at his intestines and everything looked good. He is still having some issues when pooping, but all of us want to get him home to see how it goes. With a guy this age you don't know how much of it is in his mind because it was hurting him so much before. I am hoping once he is in "his environment" he won't concentrate on it so much and it may not seem so bad. It was like Christmas at our house when the boys came home from school and Eli was here. Amazing how 3 weeks in the hospital can make you really realize how great it is to have everyone together.

My grandmother's memorial was really nice. My two uncles were there, and so were lots of friends from way back.....It was nice to remember her. My mom and dad will be going to Charlotte for the burial, I will be staying here. As John told you, I feel it was a "God Thing" on Sunday. Neither my sister nor myself had been to see her in a long time, and we both felt compelled to go see her on Sunday when
Dad called and said she wasn't doing well. We were both there when she passed and I do believe that she knew we were there with her...it was peaceful, and it gave me peace.

We will start Long Term Maintenance on Monday morning. We start with an LP (Lumbar Puncture) and we aren't sure if the doc is going to want to go with the Methotrexate or not. ( this is the one that we think gave him the seizure) So we will wait and see. But the chemo from now on should not be nearly as difficult for him...we should be able to get back to "normal" by the end of the year. It will be nice to be able to do more as a family....I am really looking forward to having us all at church worshipping together!!!

Please pray for my sister, Judi, and her family. Her husband Paul is in the hospital (had to go in this morning at 3am) with a bowel obstruction. He is in some pain, and they may have to operate.

Thanks for checking in.

Maria

I am thankful that we are home and together as a family!!!!

Today's counts were ANC 163, hemoglobin 10.7, and platelets 109.

We are glad to repot that Eli's ANC has improved but we need to see it improve a few days in row to know he it is really headed in the right direction. On another more sad front Maria's grandmother passed away today. She was 92 years old and live an incredible full life which we celebrate today. She was a blessing to all us (even though she has been sick for a while and we really have not spent as much time with her as we wish we could have). While when this happens it is always tough, one of the blessings is that Maria and her sister were able to be there with her in the end. Please pass along your prayers for Maria's dad and his brothers during this time.

Thanks for checking in.

John on behalf on Maria

We are thankful Eli's improvement, a long life well lived, and for so many thoughtful and caring friends (and on a much less important note -- Go Tigers!! 2-0).

Back in the basement.....I cannot tell you how frustrated we are.

ANC 0
Hemoglobin 7.4 (He is getting some blood today)
Platelets 73

Don't really have much to say....John spoke to the dr and they are going to do a CT to rule out an abscess in his intestines and also do some type of test for a viral something.....but not until Monday. If both of these come back negative, we are waiting for the virus to "die".

Please pray for my family. We have tried to stay strong through this, but it is running thin for both us and the boys (not to mention Eli.)

Thanks for checking in.

maria

Well, yesterdays ANC was ZERO again.....grrrr! But today was:

ANC 30
Hemoglobin 8.7 (This came up from 7.7 yesterday without getting blood)
Platelets 54 (This came up from 43 yesterday)

Hopefully we are finally recovering, although we would like to see the ANC higher. The pooping continues to be an issue and there is nothing we can do about it until his counts are at least 1000 or so. They finally opened the atrium this afternoon.....Hallelujiah!!!! His spirits are OK, but this evening he begged John and I to let Sam stay with him. He misses them soo much. I try to go by during the weekends, but it is nearly impossible to do it during the week and have the boys in bed at a decent time.

The flow test came back negative for relapse.....that is the "final word"...Praise God!!!

There is a video on you tube that I would like everyone to see.....

http://youtube.com/watch?v=AGS4yE5v9rM

It is hard, especially for me (I cried through it) but very, very powerful and unfortunately, true.

September is Pediatric Cancer Awareness Month...I bet most of you didn't know that. So I have to ask WHY? Here are some of the facts:

* September is pediatric cancer awareness month, which nationally goes largely unrecognized;

* Childhood cancer remains the leading cause of death for children under the age of nineteen;

* Each year, more than 12,000 cases of cancer are diagnosed in children;

* In the u.s. alone, almost 3000 children die from cancer each year, more of them die from cancer than from all other childhood diseases COMBINED;

* The incidence of childhood cancer has increased every year for the last 25 years;

* In the past 20 years, only one new cancer drug has been approved for pediatric use;

* Only 3% of the budget from the national cancer institute goes towards pediatric cancer research!!!!

* The government recently cut the budget for childhood cancer research;

* Currently there are between 30 - 40, 000 children being treated for cancer in the u.s.;

* As a nation, we spend $14 BILLION per year on the space program, $9.7 BILLION PER MONTH on to support military operations in Iraq and Afghanistan (not including the request by the currrent administration for $100 billion in "emergency" war money), but ONLY $35 MILLION on childhood cancer research per year;

* The national cancer institute's federal budget for 2003 was $4.6 BILLION. of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%;

* Approximately 20% of adults with cancer show evidence of spread, yet almost 80% of children show that the cancer has spread at diagnosis;

* The for prevalent form of childhood cancer is leukemia, a cancer of the blood;
the second most prevalent form is brain cancer;

* Twenty-five years ago, diagnosis of leukemia was a virtual death sentence-- TODAY, CHILDREN WITH LEUKEMIA HAVE A SURVIVAL RATE OF OVER 75%-- THANKS TO RESEARCH;

* The outcome of other pediatric cancers, such as metastatic rhabdomysosarcoma, HAS NOT IMPROVED IN 30 YEARS

what do you think about them apples???

Here's some more food for thought:
"Cure rates are steadily improving, but treatments are painfully long (up to 3+ years). Families are thrown into chaos, children are challenged by long term side effects and despite medical advances, some will die."

And here's something taken from curesearch.org:
"New shoes, backpacks, sharpened pencils, glue sticks and the butterflies of waling into a classroom on that first day- the start of a new school year each september reminds us of children. Yet, this new beginning also reminds us that some children are not so lucky.
On the first day of school- and every other day this year- 47 children will be diagnosed with cancer. That's two entire classrooms of children each and every school day. For the 12,500 children diagnosed with cancer this year, this special day magnifies the reality that they may look different, they may be in the hospital, and they may miss the joy of this and other milestones.


RESEARCH IS THE KEY TO CURE

Childhood cancer remains the #1 cause of death due to disease in children. While we celebrate all the survivors, we also take time to remember children who were diagnosed before a cure was possible for those children that contributed to the knowledge we have today, who have brought us closer to a cure.

For all the families who have been touched by childhood cancer, and for all those who will be during this school year, 47 children every school day- WE MUST CONQUER CHILDHOOD CANCER.
Imagine the difference it would make if every parent of every child starting school in september donated one dollar for each of the 47 children who will be diagnosed on that first day of school**I copied this info from another cancer kid's mom....thanks Maggie!!
Why is it that breast cancer, colon cancer, and others get so much attention yet the cancer that strikes those that cannot speak for themselves goes largely unnoticed unless you are personally touched by it?

How many of you have ever even seen a pediatric cancer awareness ribbon ( I can't find one..), and how many of you have something with a pink ribbon?

I am not saying that these other forms of cancer don't deserve a cure just as much, I am just saying that it makes me Mad when the hospital where we have been for the past two weeks has nothing at all posted about Pediatric Cancer Awareness, yet there are already bulletins (3 of them) for the Komen Race for the Cure in October. And this is in the children's hospital.

Again, when this horrible beast touches your life you ask, Why? But then it's Why aren't there more people outraged by this?!

Anyway, that is me on the soapbox. I will step down now.

Thanks for checking in. I am home this weekend taking the boys to sports while John spends some time with Eli. Prayers: for counts..... pray for a baby, Braylin, who is having a bone marrow transplant. His family is from Greenville and his mom is quite scared. Another boy, Justin, is in the hospital with an unexplained fever.

Maria

I am thankful for my Mother. She has been taking care of Jacob and Sam everyday and literally keeping my home functioning. I don't know where we would be without her.

Todays counts:

ANC 60
Platelets 45
Hemoglobin 8

Eli's ANC is coming up soooo slowly!! The doctors were concerned about it and so Eli got a bone marrow aspirate today to rule out relapse. Needless to say, I did not get a whole lot of sleep last night and I am a bit tired today. So they didn't take my poor baby until after 12 noon.....I was fit to be tied!!! He couldn't eat or drink the entire time....the problem is that that is all we can do here.....ANYWAY....the test came out OK so far. The dr looked under the microscope and said that everything looked fine, but we will get the "official" results tomorrow.

If there is no relapse we are looking at some type of infection....so we will wait.

The boys started all of thier sports on Tuesday and my mom was such a sport (no pun intended) about getting them ready for everything. I really don't know what I would do without her.

I am on the computer at the nurses station, so I need to make it quick. Thanks for all of your prayers and thanks for checking in.

Maria

I am thankful that Eli has not relapsed and we can continue our treatment.

Today's counts:

ANC 30 (At least we are going in the right direction)
Platelets 120 Boy, that bag yesterday did the trick!!
Hemoglobin 8.7

Eli was in a really good mood today. The boys and I went by after church to visit and he was all happy. He had told the nurses all morning that I was bringing him a cheeseburger with cheese and ketsup, so of course I had to get it for him. He is also eating rice like crazy. Thank goodness for those microwave in the bag rices....they are a real help. He cannot eat any leftover foods right now, so that makes it easy for us to make it fresh each time.

John tried to renegotiate with the dr but she really held her ground at 200 ANC to go home. (This made him mad and he has decided that he doesn't like her!!) The five of us went outside and threw the frisbees that we got at church. It was fun, and Eli especially seemed to enjoy it. It wasn't hot at all today because it has been raining here for a couple of days. But it was good to get out with all of us together.

Church was really nice. I never realize how much I miss it until I am there. I was thinking as I looked around that my entire family has not been together at church since New Year's Day....wow. Just something else to look forward to in 2008 or so....once we get Eli straight on all of this maintenance stuff and see where his counts end up. I think he probably misses all of the socializing with church as well. He got a great book bag at the hospital last week and he keeps talking about "going back to school"...

My funny story of the day...

So the other day I let Eli play with a brown magic marker. He got it all over himself, but it was the washable kind so I wasn't worried about it.....John calls from the hospital and tells me that he had quite a scare, but everything was OK. He says that he was putting Eli's shoes on to go into the atrium and play and he noticed that Eli's toes were black!!!! Well, of course he starts FREAKING out wondering what kind of infection are we dealing with now, how is he going to call me and tell me, etc....then he carries Eli closer to the light and takes a closer look....it looks a little bit brown, not so black. So then he wets his finger and rubs it over the toe, and lo and behold, the brown comes off!!!! So then he called me and I told him about the marker...ooops. I guess we need better communication....ha..ha

Please pray that Eli's infection takes care of itself and his counts continue to rise....also pray for Malaysia's family, as she passed away last night.

Thanks for checkin in.

Maria

I am thankful for our church family. It is amazing being part of a group that truly feels like an extension of my own family. Thanks for listening and being there!!!!

Todays counts are:

ANC 20
Platelets 9 (He got a bag this afternoon)
Hemoglobin 9.0

The counts are still really low. The dr came by and told John that thier theory right now is that Eli must have an infection in his bottom. Unfortunately, that is a guess and we cannot "go in" to see if it is true because he is so neutropenic. (Can you say catch 22?) But the infection is causing his counts to stay at rock bottom....the good news is that Eli has not been running a fever for about a week, so it must not be that bad of an infection. So we will wait it out. He will continue getting the IV antibiotics and we will see. Unfortunately, she also made it sound as if we weren't going anywhere for a while. Great.

The boys and I went to see Underdog this afternoon then we went to the hospital for a couple of hours to visit with Eli. He is really so much more himself when his brothers are around. It is fun to see him play and smile more. I think when it is just John or I he gets a little depressed at times.

Tomorrow I plan to go to church with the boys. I haven't been in what seems like forever, and I really need it....

Thank you to Jean Lassiter and Maggie Compton for giving money for my walk!!!

Thanks for checking in.

Maria
www.active.com/donate/tntsc/elisteam


I am thankful for my wonderful husband, John. I realize how lucky I am to have such a strong marriage as we go through this....