MERRY CHRISTMAS!!!

I hope everyone had as great a day as we did today. The weather here was actually 75 and sunny, could not have been more beautiful. The boys got us up at 5am. We made them stay in bed until 6, but it was very difficult. They loved all of the gifts, and we had an amazing morning. Our families came over for brunch and we all celebrated.

I have caught myself comparing this year to last so many times this week it is crazy. We have been so, so blessed in 2008. Last year we spent this week in the hospital (again) with fever. I know this may jinx us, but we have not spent a day in the hospital this year!!! Thank God!! Our prayers have truly been answered, thanks to everyone who continues to pray for us daily.

What a marathon day at the clinic we had today!!

We got there at 8am and left at 4pm....just like old times :)

Everything went well, just took such a long time. The pentamadine and IVIG went without a hitch.

Eli's counts are: ANC 1724
Platelets 174
Hemoglobin 11.8

So things are still really good. Eli's cough is gone now, so I guess the steroids helped with that. I am glad they helped, because this time things were quite rough!! I again felt as though I was living with the "abusive husband" never knowing what might set him off. He threw 3 major fits yesterday over tiny little things and I thought I might lose it. I was really worried about today because we knew it would be a long day, but it went perfectly. Shows that just when I am good and worked up over something it will turn out ok. Somebody up there is looking out for me....

Today really had me looking at my blessings....although we were at clinic for a long time, that is no longer the norm in our lives. We have gotten to a new normal...there are still the times when I catch myself obsessing over things I cannot control and what might come down the line, but our lives are still really good right now. And as I have said before, although this is not the path I chose, this is the path that will end with Eli being cancer free. That is all that matters. I will take it every time. I warned you a while ago that I am getting sappy this time of year.....

Thanks for checking in.

Maria

I am thankful for running into Dawn and Matthew today. I am so thankful that this precious family is doing well and they are expecting a baby girl in a while!!!

So we will stick to the IV Pentamadine....

Eli's try at inhaled Pentamadine did NOT go well...apparently there is a terrible taste/smell with the medicine and he screamed the entire 2 minutes or so that we tried it. I even had skittles to help with the taste..but it was not to be. When we got back to the oncology clinic there was a teenager and he does it by inhaler. He said that it really smells horrid and you have to fenagle the inhaler just right so that the mist doesn't go into your mouth and create a horrid taste along with the smell. Obviously Eli cannot do this yet. It also didn't help that in the room where he got the procedure there were NO distractions. It was basically him, me, and the nebulizer. Great. I tried to get him to color, but it just wasn't happening. So...we will stick to IV. It does take 1 hour, but it is pretty painless. He does get nauseous, but they give him Zofran as a premed, so even that isn't an issue.

Eli's counts have dropped, but they are still great:

ANC 1480 (normal 2000-6000+)
Platelets 165 (normal 140-440)
Hb 11.2 (normal 11.0-15.0)

These numbers are awesome with him being on 125% chemo now. They are really where they want them to be, now is just seeing if they can stay there or if they drop. The one number that is low is the immunoglobuling (IGG) level...this means we go next Tues for an IVIG infusion. This one is a long one, very similar to blood (it actually is a blood product) So we will be at clinic for the entire day...so glad Eli seems to enjoy it so much!

I am sometimes brought back into how serious things can be with Eli...things that I wouldn't give a second thought with if it were any of my other boys. Eli's cough is back, although he isn't coughing at all at night and only seems to cough really in the morning. BUT...since it has been around a while, we took a chest xray today. Pneumonia in these kids is such a killer that you can never be too careful. The xrays came back clear, so things are great....thanks to God for that one!!

In a nutshell, that was our day...exciting, I know.

Thanks for checking in.

Maria

I am thankful for the friends and aquantinces that I have met at the clinic. It is amazing how much support there is in simply talking to the mom next to you that is going through this as well...

This weekend we had so much fun! Daniel Island had a Christmas Festival and we went to listen to Jacob play the taiko drums....the group was great, and we really enjoyed ourselves.

We went to clinic on Thursday because Eli had his first dentist appt on Fri and we wanted to be sure that his numbers were good...his numbers were great, (ANC 2940, Platelets 297 Hgb 12.1) so we went on Friday to the dentist. We got a script for Amoxicillin for just one dose to give to him before the appt. He was such a big boy!! The dentist said everything looks great, which is such a relief. Between the antibiotics he has been on and the chemo he is on, there can be some significant issues with dental stuff. Hopefully we will be able to avoid those side effects....

The oncology clinic moved to the 6th floor of Rutledge Tower....it is so roomy and nice. The rooms are smaller, but there is more a sense of privacy in the infusion room(s). I am glad that this has happened so our kids can be more comfortable when they are getting treatment.

John and I got to go to see Darius Rucker in concert on Friday night and it was great. He has such an amazing voice, I think I would like him singing anything.

Just wanted to share something with you. I got this off of someone else's caringbridge site and I thought it was amazing.....

The Strength of an Egg
Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make.
An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet that same egg, tapped gently at an even slightly different angle will break. The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.
That is where parents of children with cancer are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.
Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of kids with cancer will pick themselves up and put themselves back together again.
by Juliet Freita

This is soooo true, and really answers the "you are so strong" comment. I don't feel so strong, just have to be....I feel any other mother would be doing and acting the same exact way as me if put into this situation. I rely heavily on my friends and family for daily support and prayers. And I recognize daily how lucky and blessed that we are having ALL....and I thank God for that with every breath.

Anyway, I guess I haven't gotten sappy for such a long time I felt it was time. The holidays really get me thinking, and I think this will be the case for the rest of my life. I remember 2 years ago as we noticed Eli wasn't himself, going to the doctor, Eli limping and being sooo irritable...John and I trying to figure out what was happening to him. Finally, New Years 2006 party when I really had the strong sense that something was VERY wrong with him..actually saying the word "leukemia" to my friends for the first time...but that couldn't be it, not my HEALTHY boy....then the diagnosis. Christmas and the New Year will forever bring a certain feeling of anxiousness in my that I can't quite shake.....hopefully over time it will lessen, but I am quite sure this will not go away.

That is my 10 cents for today. Please pray for us on Thursday. We go in for monthly chemo and are getting our pentamadine by inhaler as opposed to iv...hopefully this will work better. The iv has been fine, but it takes a long time and apparently isn't as effective as the inhaler. so we will try it....

Thanks for checking in...

Maria

I am thankful for a wonderful Thanksgiving and Christmas season....NO hospitalizations in 2008!!!!