This morning was a quick trip to the clinic, then off to the aquarium for us. Eli was really excited to be going to the aquarium, so everything else went off without a hitch. His toe is beginning to look bad again and we haven't had this problem since we started LTM in September. Then I thought, well, he also has been wearing sneakers since about September. I wonder if it is his shoes? I will soak the toe, keep looking at it, and encourage him to wear the sneakers for a while.

His counts were: ANC 3420 (Normal but still higher than we want.)
Platelets 230
Hemoglobin 13.0

The counts look good....Bobby also said the enzyme levels I was worried about came down to more acceptable levels. Glad to hear that. Whenever we increase a med like we did a few weeks ago I always worry about the possible side effects we could experience. The methotrexate effects the liver and that is what the enzyme levels are all about. Again, just a side effect that we will deal with as long as he is relatively healthy at the end of all of this.

It was good to see all of our buds at clinic. Ryan Post looked awesome and seemed to have tons of energy. I love it when we have days like today in clinic.

Eli is turning into a merman!! He has decided to do "swim team" like his brothers, so we are going to the pool just about every day and he is putting his head in the water and swimming along with them. He always has his swimmies on, but I don't think Jacob put his face in the water until he was 5 or so!!! What a big kid!!

Please pray for the family of Elijah Carlson, another little guy that lost his battle this week. I really hate cancer and all that it does to our families and watching these kids die too young....there are no words to express to those families that have lost a child...

Thanks for checking in.

Maria

I am thankful for such an uplifting day at the clinic. It was great to see everyone there looking so happy and healthy!!

Today's clinic appointment was uneventful, just like we like them. We were there for a while because he got his IVIG treatment. Because it is a blood product they infuse it over hours in case of a reaction. It went well, no problems. His counts are:

Platelets 192 (normal)
Hemoglobin 11.2 (normal)
ANC 5426 (normal)

The ANC is way higher than they like to see....but we increased the methotrexate two weeks ago, so now we wait to see if the counts stay high or he may be getting ready to fight some type of infection. (Don't you just love how exact medicine is??!!) He could have also gotten a "boost" in his counts from the steroids he finished last week, who knows? We will wait another month (6 weeks in total) and then we will probably increase some more meds. The problem is we have to watch for any other side effects as we increase these.

The study that Eli is on has been suspended due to older children developing something called AVN due to the steroid dexamethasone. This isn't very common in children Eli's age, but not unheard of. I asked the doc if we should get a bone scan since we were on the arm of the study with a full 21 day cycle of dexamethasone. She said she would talk to the "team" and get back to me. The thing is that they know the dex works to help the chemo, so it is a good thing, but this AVN effects all of the joints and bones in the body and basically eats them away sorta. Not a good thing to have....but I guess none of the side effects are, huh? So we will wait and see on that one.

We also asked for a consult with nuerology in a few months. Eli is getting ready to start his last cycle of 2 LP's every 3 months to 1LP every 3 months and we have talked about taking him off of the anti-siezure med we have had him on since last year's seizure. But as John and I talked about it, we realized that we really hadn't asked a whole lot of questions regarding his lesions, seizure, etc. at the time. We were barely holding our heads above water. Now we think we should really go into a real conversation about how this may affect Eli's learning, etc. See what the docs can tell us based on the MRI's he has had over the past year.

Things here continue to go really well. We saw the one of the fellows at the clinic today that we haven't seen since Christmas and she really didn't recognize Eli at first....he just looks so great.

Thanks for checking in.

Maria

I am thankful for our wonderful doctors and nurses that take such good care of Eli.

HAPPY MOTHER'S DAY!!!

I hope all of the moms out there had a great day....we sure had a full weekend.

I know that I have been really lax in posting, and I will try to get better. For some reason my computer has been really slow and I get frustrated and turn it off!!

Eli's visit to the clinic last week went off without a hitch. We even took John's mom to get an MRI while we were there, and although she had to wait a while for us, things went fine. Eli's counts continue to be good, in fact they are too good....so, we increased his Methotrexate that he takes every week to see if we can get him in that "range" that they want him to be in for chemo.

This week we got a finger poke at home, but his blood clotted on the way to the lab so we never got the counts. I think we will just go in weekly so we can always get the update. I live by those numbers, and I don't like flying blind for a week. This week we will go in and get his IVIG, which is an immunoglobulin transfusion to help with his immune system. Because it is a blood product it takes some time, but everything should be fine.

We had such a great weekend!! Friday Eli was the "honorary co-captain" of the local major league soccer club, the battery. He got the flip the coin and everything and was such a big boy!!! The Team in Training team that set it up raised lots of money for LLS...so thanks to those that came out!! Then we went to St. Christopher camp at Seabrook Island for our church retreat on Saturday and got to spent the day on the beach will all of our friend. We spent the night there and came back yesterday afternoon. Whew!!!

As I watch Eli this summer, I am amazed at him and my other boys and how they have adjusted to all of this....

Please pray for the family of Samuel Bachcus, a little six year old soldier that lost his battle this week....also pray for all those mothers that have lost children. I cannot help but think what a difficult time this must be for them.

I will try to post every week....promise.

Thanks for checking in.

Maria

I am thankful for my mother!!!