Happy Wednesday!!

We went to the clinic today and had our MRI done. All was uneventful. The results from the MRI weren't back by the time we left, so if all is fine I imagine we will see the images on next Thursday when we visit. Eli's counts were:

ANC 800 (not,bad, but with cold and flu season we will try to stay close to home)
Hemoglobin 9.4
Platelets 93 (This came up from 74 last week, so I was happy to see that.)

Eli continues to amaze me with his bravery. Today he allowed Bobbi to access his port without even flinching. He simply sat on my lap and let her do it. The same with taking everything out at the end of the morning. WOW. He is such a trooper. Because we went to clinic today on Wed instead of our normal Thurs, we got to see lots of friends. Kinsey, Wade, and Zachary were there and Eli didn't want to go home!!

Report cards came out today and my man Jacob has straight A's again!!! He earned himself $70 for this feat, and I told him he can continue this as long as he keeps the grades up. Sam also did tremendously well, getting 2's and 3's across the board.

I registered Eli for preschool for next year. Although I know I am going to be freaking out come September, I also know how much he will love going to Christ Church Preschool and how everyone there will take such good care of him. I know that if I didn't have the folks there I would be keeping him home with me until Kindergarten.

The move continues, and feels never ending at this point. I did go in on Tuesday with a professional organizer and set up my kitchen. I know this sounds almost silly, but it was the best money I have ever spent. My kitchen is completely set up and ORGANIZED!!! What a way to start a life in our new home!! The movers are still set for Friday, so then things will go quicker.

Well, that is life here at the Crowley's this week. Thanks for checking in. Please continue to pray for the Secevich family as they try to adjust to life without their precious son, Luke.

Maria

I am thankful for my sister and brother-in-law's wonderful 20 years together. Way to go Judi and Paul!!

Whew!!! We are finally done with the 5 days o'steroids. And boy did they bump his ANC. Our counts today were:

ANC 3500 (We have never seen it that high!!)
Platelets 74
Hemoglobin 9.4

His platelets are low again so we may have to adjust his chemo again next week. We have a MRI on Wednesday to check for the methotrexate (please pray that it turns out OK) I think that is the last time if it checks out.

Gotta run, it is rainy and my keyboard is sticking...so gotta run.

Maria

Here is a picture of the new Crowley homestead!!! We will move in on Jan 25!!!

I am sorry I was so slack last week. Our appointment on Wednesday was a long one, we were there from 8-3. Everything went fine, I just wanted them to give him his Pentamadine IV while he was accessed, and they wanted to wait until he ate after his procedure.

The steroids are back!!! Yuck...it is really not much fun. The good thing is that we only have the 5 days then we are done.

We walked 10 miles last night...getting ready for the 13 to come soon. I know I will be able to do it, there is just a question of whether or not I will be able to get out of bed on Sunday Morning. This morning I really wasn't sore at all, so I think it will be manageable.

Here is a new video....this one includes us!!! It will make you cry...just warning you. The funny thing is, many of you can relate as "before I had a friend who had a kid with cancer...."

http://youtube.com/profile?user=PysankiKMHW

Things here continue to go well. Thanks for checking in.

Maria

I am thankful that we were able to buy a larger house where we will all be more comfortable.....

This morning John and I went to the funeral of Luke Sechevich, a little three year old boy that we met in clinic. Luke had a very aggresive form of brain cancer. In the past few months he looked so great....unfortunately, his cancer came back. My heart was breaking for his mom, Dawn. I can only imagine the pain she is going through. Luke and Dawn were the first people we met at the clinic last year. I remember looking at Dawn and how strong she was and thinking that I could do it too.

I told John on the way home that I still am amazed at how little the docs seem to know about cancer....we are far from having this beat!!!

Please pray for this family as they adjust to life without their little boy.

Thanks for checking in.

Maria

I am thankful that I knew Luke and his beautiful smile!!!

Merry Christmas and Happy New Year from the Crowley Boys!!

Well, unfortunately I was right. John took Eli to the ER at about 1am on the 28th. We were kept a couple of days to be sure the fever didn't come back and to give him some antibiotics and we came home the afternoon of the 30th. They did check Eli's immune globulin level and it was quite low, so he got an IV of that before we left the hospital. This is called IVIG and hopefully it will help him with the colds and whatnot around this time of year. The hospital stay was fortunately uneventful and we were home for New Year's. John was on vacation so the boys were taken care of, so things worked out. We didn't go to Atlanta because John and I both really want to avoid having to go to an unusual hospital...so we will try another trip there during Spring Break when cold and flu season is at an end.

We went to the clinic today and here were his counts:

ANC 680
Platelets 166
Hemoglobin 9.8

These numbers are decent. The ANC is low enough where we probably will try to avoid lots of people. I think this may be our routine for the remainder of the winter. Our onc. was pretty happy with the numbers, she said you want the ANC to be about this number because it means the meds are working. (This is what JOhn always says, but I would rather have the numbers high) Next week we will have our LP, so it will be a long day. We switched antibiotics at our request. The one he was put on in the hospital was starting to cause "gagging" issues, and John and I were both terrified that Eli would begin to vomit again. The meds have gone so well recently and we don't want to mess that up.

Today marks our one year "anniversary" of Eli battling this disease. It amazes me how much I have grown as a person and how my family has grown. I have been a witness (either by way of clinic or my discussion board) to no less than 10 children that have died.....I have watched my baby suffer and felt helpless, I have cried out to God to help my child and the others in this same position. I have been supported by incredible family and friends whose vocabularies now include "ANC, LP, and ALL". I have had people that we know and many that we don't praying for Eli and our entire family.....and.....we have gotten through it!!! I won't go as far as to say we are better for it, because I truly wouldn't wish this on my worst enemy, but we are getting through. We are at the one year mark and I have an energetic three year old that drives me nuts!!! I know that through suffering we are made into the people that we should be, and I see that in my family. My children are so much more understanding of anyone that looks "different" from them, as they are now used to a brother that walks around with a mask on his face!! Anyway, I guess this is my longwinded way of saying, Whew!! we are one year down, two and a half to go.....then a few more being anxious...but I am so thankful!!!

Thanks for checking in.

Maria