Thankfully things have been relatively uneventful lately. Eli has a little cold, but between him and the boys starting school that is to be expected....just pray for no fevers!!

Here is one of the very few stories that have been published recognizing childhood cancer awareness month

http://www.boston.com/bigpicture/2008/09/childhood_cancer_awareness_mon.html

take a look...they are some very powerful pics.

We will go into clinic for regular checkup and bloodwork Thursday. It will be interesting to see if Eli will choose to get a finger poke or his tubie. The past two times it has been the tubie..go figure!!

Please pray for another little one lost to this monster, Jayse, and her family. I cannot imagine the grief. May God give them the strength as well as the peace that passes all understanding....

Thanks for checking in.

Maria

I am thankful for more beautiful fallish days here in Charleston!!

Well, 14 years ago today John and I were married...whew!!

I can honestly say that the past couple of years have been tough for us...really the past three with John's dad passing away in 2006...and I cannot imagine going through any of it without him. He has been an amazing partner and father. Couldn't ask for any better.

Eli's team is officially training. If you haven't gotten a letter from me, you will in the future. Please give as much as you can. As I have said, pediatric leukemia is a success story in the world of cancer, but there is so much that we need to learn. The good thing about LLS is that they also help support those families that need help during this crisis in life. I think that is a good thing. We are so blessed in that we don't have to worry about our medical bills, transportation, etc. It is a real problem for many folks, especially in today's economy. So, give, give, give. Here is the link:


http://pages.teamintraining.org/sc/myrtle09/mcrowleipv

You will here much more about this as the time gets closer. WE will be walking on Valentines Day, 2009.

Thanks for checking in. Because Eli's counts were good and he was on steroids this week we get to miss a week at clinc whahooo....

Maria

I am thankful for John and my marriage.

Todays counts: ANC 1800 (good considering they increased chemo two weeks ago)
Platelets 191 (Normal)
Hemoglobin 12.1 (Normal)


Clinic went well this morning other than the whole "MUSC time" thing. I told John one morning as he called frustrated that things were taking so long that you just have to realize that it is almost like the twilight zone. The minute you step in those doors time has no meaning....

We got to the clinic at 8am and Wendy accessed us almost immedietly. Then, we went to see Cliff in the hospital while the labs came back and they ordered the chemo...well, we visited, came back to the clinic about 9:45 and the meds still weren't up...he finally started at around 11:00. So, we were able to leave a little before 1:00. But he handled everything so well!!

Because Eli's numbers looked so good and the steroids usually increase them if anything we get another 2 weeks in between visits to the clinic. That is a nice change of pace. I am already trying to plan what he and I will do together next week. Now that he is in school I feel like we don't spend much time together.

The rash continues and Dr. Pollack (our wonderful derm) took another look today. He prescribed a stronger ointment..but we ultimately came to the conclusion that the steroid pulse every month will keep the rash at bay so to speak, so we may just use the ointment and hope it continues not to bother him. As I have said, we know what it is not...it is not infectious, it is not fungal. We just can't figure out what it is...but as long as those two are ruled out, I am not going to worry about it much.

John has been out of town this week so it is just the boys and me. We have had a pretty good week. Sam played in his first football game of the season tonight and scored two touchdowns...he is one tough kid.. Jake had soccer practice and continues to do well.

Thanks for checking in, and thanks for your prayers.

Maria

I am thankful that our clinic appt went well today. I am also thankful that this has become a fact of life for Eli, not something he gets upset about or dreads. He actually seems to enjoy going to clinic every week...

Have you ever felt like you have been walking in this tunnel for a long time and slowly you begin to see light, then more light, then so on? Well, that is kinda what I feel like right now. I don't think I realized that I was depressed, but I was. I don't know if it is just how good things are going with Eli, getting involved in church again, or everything put together, but I really am feeling "lighter" every day. I know that doesn't mean we are not going to have our bad days or weeks, but I rejoice in what today is giving me!!

A very wise and wonderful woman from church said her sister described it like this: " you see a storm cloud in the horizon and you always know it is there, but it isn't right over your head and there is really no reason to worry or obsess over it being there....it isn't going anywhere and there really isn't anything you can do about it but live your life!!

OK...I have been wanting to share this with you and I had to look back at all of my old posts to be sure I hadn't already. This is a song that someone from church sent to me back in January of 2007 when we were in the thick of things. It has become an amazing song for me...so I wanted to share it. I think it applies to many of us in many circumstances of our lives....

Praise You In This Storm lyrics
I was sure by now
That You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find You

As the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth


If you ever get the chance to hear it, listen. The band is amazing.

We go to the clinic tomorrow for chemo and begin our steroid pulse...yea!!

Thanks for checking in.

Maria

I am thankful that I seem to be coming out of the tunnel.

Here we are in September again....and here I go about to get on my soapbox.

DID YOU KNOW SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH?! NO????

Many of you watched this last year and cried...so I am asking you to watch it again.

http://www.youtube.com/watch?v=TEg1a8plJq4&feature=related


Eli is in this one....gosh, he has changed so much this year!!!

Please take a minute to pray for all of the families fighting this beast. We are so blessed that Childhood Cancer has progressed so far in the past 20 years, but there are still way too many children dying..and the treatment is so hard on our littlest ones....

I see that many stores are gearing up with the pink stuff...but what about our kids?!

Eli's Team will be selling Childhood Cancer Awareness lapel pins and car magnets for $5. If you would like one, please let me know and I will get it to you. We will be selling them/taking orders hopefully after church as well. I should have them in by the end of the week.

Our fundraising site is : http://pages.teamintraining.org/sc/myrtle09/mcrowleipv

Feel free to give lots!!

Thanks for checking in.

Maria

I am thankful for the staff and teachers at CEDS who have made Eli's transition to school so easy...and give me peace everyday!!

Today's clinic visit went well. Eli insisted on getting his tubie instead of a finger poke..go figure..I figure he hasn't been able to control much about this whole treatment thing, so I let him decide. He was such a trooper. No crying or anything. So I figured once he was accessed he might as well get his IVIG treatment. The treatment is a blood product so it takes about 3 hours to infuse. I was going to wait until next week because he has to get chemo, but this actually split things in half for us. Eli was great throughout. I am always amazed at how accustomed he has become to the entire clinic process...this is all he knows, and he is a true pro. Our counts were:

ANC 1136 (good)
Platelets 196 (normal)
Hemoglobin 12.1 (normal)

So they again increased his chemo. He is now at 100% again. Unless he goes below 750 again we will stay here. The onc was a little concerned about the rash, but again, we have kinda ruled the worse stuff out. The biopsy said nothing and because the steroids got rid of it it isn't an infection. So we have no idea. One thing that we are trying is switching the manufacturer of one of his chemos. I go on the LLS discussion board where many folks from all over with kids with cancer can go and discuss things, and there have been a couple of instances where a different type of a certain drug caused a rash. We figure it is worth a shot. It is the same drug, so we really aren't changing anything.

I went and visited with Cliff's mom shortly today. They are still in the PICU but she said they would probably be moving to the floor today. When I saw her and the look on her face I knew exactly how she felt...it killed me. Eli was with me, so that was good. When you are where they are now it is so hard to imagine being where we are now. The thing that I think is the worst about pediatric cancer is that the world makes you believe that it could never happen to you....it is so rare...but then it DOES happen to you...and your baby is so sick...it is so awful!! Please continue to keep them in your prayers.

So things here continue to go well. Pediatric Cancer Awareness month is this month, please pray for all of those children battling this monster and those that have lost the battle. There seem to be so many, and it is so unfair.

Thanks for checking in.

Maria

I am thankful for being blessed with such a wonderful church family that helped me and prayed me through the most difficult time in my life. Without them I would be lost...

Here are some pictures from the first day of school and the weekend at Clemson!! We are so blessed to be where we are.

I have had an emotional week thus far. A little boy that lives in Mt. Pleasant has been diagnosed with Leukemia....I don't know his parents, but they go to the same day school as my boys so we know many of the same people. They are in the PICU at MUSC right now...and I am thinking about that first week constantly. I remember how desperate and overwhelmed I felt for what seemed like an eternity. Anyway, I am going to reach out to the parents when I get a chance...what an awful thing to have to go through....I know because I have been there.

We go to the clinic tomorrow. I will let you know how things go.

Please pray for Cliff and his family as they go through this. Cancer Sucks!!

Thanks for checking in.

Maria

I am thankful for where we are now in treatment and how well things are going.

Well, we started school!! Eli was great. I was fine after a good cry at home. I think it finally hit me...the whole year...where we have been and where we are now. As I have told many, many people, we are putting 2007 far behind us. I think up until now we have been very careful in 2008, just really not pushing the envelope. Eli starting school is our first big step out of our, or my, comfort zone. I know he will love it..and they will take good care of him.

We are going to Clemson this weekend for the Clemson/Citadel game...we have been watching the weather very carefully, and it looks like Hannah is going to just be a tropical system that stays out to see, so we are going. I think Ike may be a bigger problem next week, and then there is Josephine behind him. Goodness, who knew it would be so exciting living in the Lowcounty.

We actually got out of going to the clinic this week because Eli's counts were so good last week. His rash is back, but I am not getting excited about it because it seems not to be anything major. We will go next week and then the next is steroid week with chemo at the clinic. They are going to give him his IVIG that day so I am hoping we can try to only access him once a month. Those finger pokes are just so much easier.

Thanks for checking in and have a good weekend.

Maria

I am thankful for living in such a beautiful place...hurricanes or not!!