I know it is Wednesday and those of you that follow this are saying, but they go to clinic on Thursday. Well, today I went in to see where Eli's counts were because I wanted him to be able to go to the Children's Museum with his class. Then I really thought about it and decided that I was crazy. The Children's Museum here is basically a huge area where the kids touch EVERYTHING...was I nuts???!!! So, we went to clinic, saw the doctor, and then E and I went to the aquarium together. It was the right call...I am glad I made it.

Eli's counts were great: ANC 2450
Platelets 243
Hemoglobin 11.7

All of these numbers are really good. Unfortunately, Eli has the beginnings of a cold or something. Because a cold can either make his counts go up or down depending on the virus (I Told you this was NOT an exact science, didn't I?) the doc doesn't want to increase his chemo just yet. If by some miracle the cold disappears in the next few days she wants me to bring him in to see where the counts are and possibly raise the chemo, but otherwise we will just wait until two weeks from tomorrow.

Our next appt. will be a LLLOOONNGGG day with chemo, pentamadine, and an LP. I asked John if he could come with us...this will be the first LP without the anti-seizure med on board. I am more than a little nervous about it.....I will be reciting, "Do not be anxious..." the entire morning. Diane also said they are debating whether or not to give the kids in maintenance flu shots this year. The reason they don't give it to these kids is because the shots are a "booster" for your immune system...if there is NO immune system to "boost", the shot is useless. I guess the thinking is now that maybe the kids on maintentance have a little bit of an immune system, so maybe it would give them a boost. But he wouldn't get it until he is at least 2 weeks away from his steroids. Apparently, flu shots and steroids don't mix.

We saw lots of our friends today in clinic. We aren't used to seeing the Wednesday folks. Please continue to pray for those that are in treatment and those that have finished. The chemo and antibiotics they give these little guys really do a number on their systems.

The clinic is relocating to much bigger digs!! This is such a blessing for our children. See, the Hollings Cancer Center at MUSC is this wonderful new, state of the art buiding that MUSC has for cancer patients. Only, it is used for only the ADULT cancer patients. (Again, I have to say WHAT?! These are our CHILDREN here.) The children with cancer are at Rutledge Towers with way too little space for all of the children that need to be treated. So our wonderful doctors and nurses at the clinic went to bat for us when a larger space came open in the Rutledge Tower... and they got the space. Now there can be more than 3 kids playing in the playroom at a time. They are hoping to move at the beginning of Dec. We can't wait!!!

Well, that is all I have to report this week. I will post some halloween pics when I get them. The boys are super excited!!

Thanks for checking in.

Maria

I am thankful for the cooler weather here. It is nice to have a change in seasons.

Whew!! I know I haven't written in a while, but things here have been busy, busy, busy.

The first pic is of the two older boys in their boyscout uniforms. It makes me so proud!! I often cannot believe how grown up they seem....

The next set are from our clinic appt. yesterday. Eli got chemo and we were there for a while. But when I tell people that, they think it is some terrible thing. So I thought I would share with you a "day at clinic with Eli Crowley". The amazing thing is Eli likes going....I have come to the realization that it now is much harder on me than him. (This is something that I thank God for everyday...I could only wish that was always true here...) In the beginning they access his port to draw blood, as you can see it is no big deal (thank you God for ports). Then he gets to watch some TV, usually a Scooby Doo movie. Then he can play in the playroom, make arts and crafts, etc. Then we usually go home. Things aren't always in that order, but they take such good care of us at MUSC that it has really become second nature for him. I sometimes have a hard time getting him to leave, especially if there is some friend that has just gotten there that he wants to play with.


Oh!! Eli's counts were: ANC 2010 (we may increase chemo at the next appt., but he is now at 100% so we really don't want to increase it until we have to.
Platelets 191 (normall)
Hemoglobin 11.6 (normal)
So everything in that dept. is going well.

The last picture is from Light the Night. Light the Night is LLS's version of Relay for Life except it is not all night, just a few hours. All participants get to carry ballons signifing whether they are walking in memory, honor, or support of those with leukemia and lymphoma. They had two honorary heroes, one adult leukemia survivor and one child, Eli. He was super excited and got a certificate and everything. It was really fun...I recommend it for next year!! Since we are doing Team in Training for LLS we didn't raise money, but it was great to be there and see all those that have been affected by leukemia and lymphoma.

Please continue to pray for all of those that are effected by cancers.

My idea for the day:
Let's just have the election today and everyone take the money left in the accounts and give it to charity!! (My choice would be Curesearch, but any charity will do ;)

Thanks for checking in.

Maria

I am soooooo thankful that we live in Charleston near MUSC Children's Hospital!!!

Today was a good day at clinic, and an absolutely georgeous day here in the Lowcountry!! Eli's numbers were:

ANC 1900 (good, maybe we found the right chemo mix)
Hemoglobin 12.5 (normal)
Platelets 245 (normal..which is good because he has decided it is more fun to stand in the tub than sit and has a few bruises on his noggin to show for it!!)

I was really worried the numbers would be lower because of the cold, but what do I know anyway?! The doc said the cold isn't at all in his chest and his ears look great, so we are good to go for another two weeks. Then he gets chemo and pentamadine again, but it will be another month before he gets his next LP. I love this once every quarter LP thing...it rocks!!

I was talking to another mom in clinic today. Her little guy, Chase, has neuroblastoma and she has been taking him to Sloan Kettering in NY every month for the latest "cutting edge" treatment with antibodies. Even with that for two years, she said the chance of him relapsing is something like 70% and then the chances of getting him back into remission are tough....WOW. It takes a visit like that to really shake me and bring me on my knees thanking God that Eli has ALL...even with a relapse we would have a good shot with a BMT. But you also get to thinking again about how Pediatric Oncology is the real bright spot in the world of Cancer treatment right now...so many advances have been made...but really, are they enough???? Again, my soapbox. I tell you, I don't know what the good Lord has in store for me after all of this, but he sure is giving me a passion in a big way....

The dayschool had the firemen come to school on Wednesday...BIG HIT!!! Eli talked about nothing less the entire day...

Please pray for one of Sam's best friends, Sam L. He took a spill on the playground at school and ended up in a plastic surgeon's office and surgery the next day..he is such a trooper..please help him to heal completely and with as little pain as possible...

Thanks for checking in.

Maria

I am thankful for my family that supports me constantly.