Yesterday's labs:

Hemoglobin 11.2 (Still normal, yea we don't need blood!)
Platelets 244 (Still normal, yea we don't need platelets)
ANC 566 (This has finally dropped, we will be staying out of public places)

Eli's ANC finally dropped, but too much for me....there is never a happy place. Part of it may be due to the fact that he has a cough. He also had some fluid in one of his ears...all of this could be causing the low ANC. We will just wait and see. They were going to increase his chemo again this week if the counts were still high, but now that is on hold.

Scary thing at clinic this morning. Eli has had a slight cough for a while, the docs actually thought it might be allergies or caused by his screaming at night aggravating his throat because there was nothing else to it. This has been going on for about 3 weeks. Well, this morning while he was getting his IV pentamadine, Eli started coughing and couldn't seem to stop. He then acted like he was really sleepy..then kinda fell asleep. Diane (The NP) put the pulse-ox on his finger and only got a reading of 94. Eli always runs a 99-100. So she called the respiratory therapist to give him a treatment of albuterol. He came in and gave him the treatment, then Eli perked right up. Diane thinks he may have just had a bronchial spasm...no big deal. There was neve a time where things were "critical" or even near it, but it still has me reminded that this is never normal. Anything can happen at any time. So now Eli is on an antibiotic as well as breathing treatments. It hasn't happened since then...so OK. Got to run... Pam is here to watch Eli. Thanks for checking in.

Maria

We had a great weekend. The game was an exciting one, although a heartbreaker at the end. It was cold, but we came prepared and everything went OK. Sam even lasted until 12 midnight when we got back to the car (I was quite impressed here). Eli was great at my mom's...which I was concerned about. He took his medicine without incident and even slept in a big boy bed!!

NOW...since yesterday Eli has been quite a handful.. we know it is the steroids, but it is so hard. His sleep last night was fitful to say the least, and today has been about the same. The good thing is his last dose for this month is in the morning...yea!! A three year old on steroids is just not right!!

The Today Show is doing a thing on St. Jude's hospital today and I just happened to see it...I absolutely broke down sobbing. It just hits me sometimes that this is our world now. The little boy was talking about how he was almost done with treatment and showing the chemo room, etc. It was weird knowing exactly what he was talking about....and that made me wonder....how did we get here? Why are we in this world now? Why is it my son? What is going to happen? Then Eli looked at me and told me not to cry, which made me cry harder. I then composed myself and he and I went to the aquarium and had a great time. It is funny how it comes at the weird time...kinda like you are suprised you are living the life you are....

I will let everyone know how our clinic visit goes on Wednesday.

Thanks for checking in.

Maria

I am thankful for my mom and dad and all the help they have given me over the past year!!

Todays labs were:

ANC 2220 (still higher than they want)
Platelets 253 (normal)
Hemoglobin 11.5 (normal0

The only thing a little concerning on the labs were that two of the liver indicators were high, this has never happened before. They aren't at critical levels or anything, but it is something we will have to watch. The methotrexate and 6-mp that he is on can cause liver damage, and we don't want that to happen. His bilirubin is still fine, as is the other indicator. So, as always, we will wait and see. I think I will press them more if the number is still elevated next week.

Eli got his Vincristine without any problems, it just took a while. HE was really bummed that he had to get his tubie today, no finger prick. All I could tell him to make him feel better was that he did NOT have to get the sleepy medicine. The thought still creeps into my mind how unfair it is that this is now our vernacular and that my baby has to endure so much. But as I have said again and again, we are blessed in so many ways I need to stop my griping.

We start the steroids tonight....for the next five days. It really didn't seem so bad last time, so hopefully we will have the same experience this time around. Please pray that we do. He has been doing so well.....

Thanks for checking in. I will try to check in again after the weekend. We go to clinic this week on Wednesday not Thursday due to Thanksgiving.

Maria

I am thankful for my family.

I was meaning to post on Thursday, but our appointment at the clinic was so painless and quick, I think I just wanted it to seem like a "normal" week!! Anyway, here are the labs from Thursday:

Hemoglobin 12.1 (Normal)
Platelets 293 (Normal)
ANC 2366 (Good)


The ANC is still higher that they want it to be, so we increased his 6-MP that he takes every night. They want the ANC to stay between 1500-500. So we will see what the increase takes us to over the next month or so.

WE go in this Thursday for Vincristine and then take his 5 day steroid pulse, but we have a month off on the LP. This is nice since he had to be sedated twice last month because of the MRI. The sedation isn't the big deal, it is that he cannot eat or drink.

The garage sale went really well. We raised $556 for Team in Training!! I was really glad....and my house seems less junky now which is always a bonus.

Eli continues to do so well!! His mood has been great and he seems to feel good. He has a cough that I am a little worried about, but I will have them check it out on Thursday when we see the doctor. Because he is doing so well we only have to see the doctor every two weeks, the other two we will just go in to have labs drawn....YEa!!

We are going to go the the Clemson game with the older boys this weekend and Eli will stay with my mom. It should be good. If Clemson beats BC we will go to the ACC Championship....a very big deal!!

Jacob's class is doing a fundraiser with SunTrust Bank. They are going to create artwork and sell it at an "Open House" at the bank one night in January. The class was "adopted" by SunTrust for the year.....the lady who is in charge of the class for SunTrust had a granddaughter (15mos) that lost her battle with Leukemia last year. Isn't it amazing that the CLASS decided to give the money to the Leukemia and Lymphoma Society before they even knew this?! I sure think so....

Hope everyone has a great week. I will post on Thursday when we come home from the clinic.

Thanks for checking in.

Maria

I am thankful for everyone who helped and donated for the garage sale and all of the children that sold hot chocolate and muffins!!

Here is an amazing analogy someone on my LLS Discussion board came up with to help people imagine what our "walk" with cancer is like. I wanted to share it with you:

Analogy


This journey is like a long cold winter evening with fresh snow on the ground. You and your family have to walk from your current home to a new one that you were told was constructed for you many miles away. Portions of the route you or other members of the family are familiar with, others portions, the family is not. The fresh blanket of snow covers the route so you are not completely comfortable with what you thought you knew at the beginning.

As the family begins the journey, the blasts of cold artic air forces everyone into buckling and zipping up, a numbing sensation begins as you attempt to adjust to the environment. The darkness of the night forces everyone to rely on other senses that they normally don't. We can't see very far so now we have to rely on hearing, touch, smell, and taste. We need to expose ears, hands, nose, and mouth, to the cold to help find the way. At the same time to much exposure could result in frostbite, gangrene, and eventually death. Not enough exposure and you will never reach the destination and eventually lead to exposure.

After the individuals in the family have adjusted to make this journey into a family endeavor great progress is made towards reaching the new house. At the same time complacency will lead to failure, a delicate balance of adjusting to each leg of the journey and the needs of the individuals without causing harm to the family takes on greater importance then you every imagined, problems with one member could easily have a domino effect.

As the journey progresses there will be times when whiteout conditions occur and the only option will be to make a snowcave and wait for the storm to pass. Other times the air will feel so crisp and clean that you just want to stop and go no further because you will try to convince yourself that this is good enough, no need to continue the journey someone will find us and give us a ride.

Knowing when to dig the snowcave or forcing ourselves to go on when we think we’ve traveled far enough is a delicate balance that needs to be assessed on a daily basis. There are no guarantees that the family will reach the house. Families that have traveled the route before illuminate a light at the end of the journey but you can not follow completely in their footsteps because the fresh snow has covered the tracks.

We are blessed that Eli has proven to be such an unexpected resilient navigator for our journey. Our immediate family is adjusting to this new life with only minor bumps in the road. Our extended family has provided the love and understanding that is needed now more then ever before, and finally for the doctors, patients, and other cancer families that are illuminating guidance beacons as we navigate through this 3 year extended winter night.

Thanks for checking in.

Maria

What an amazing weekend for the Crowleys!!!

Jacob got an award for making the "A" Honor Roll....we are so proud of him. He also got perfect attendance for the 9 weeks.

Halloween was a blast, as I said before. The picture of the boys pretty much says it all....do you think they have an attitude or what?!

Then today, we celebrated Eli's 3rd birthday....Amazing. It is so great to see how well he is doing now....I find myself just overjoyed. He had a pirate birthday and we ordered a cake from Julia Stoner of Cookie Obsession....she did a fantastic job and the cake not only looked incredible, but tasted great!!

The weather was 75 and sunny...again, beautiful. So the kids played outside and the grownups talked inside. It almost seemed as though God was looking down, smiling, and saying "Eli, you deserve it." I know things probably won't stay this good for the entire next 3 years....but it is weekends like this that you store for those times when you need them. Seeing Eli so healthy and happy....as you can tell, I am smiling as I write this and I can't stop!!

Hope everyone had a good weekend. Thanks for checking in.

Maria

I am thankful for our amazing little boy and soooo thankful that we made it through this year and things are going so well.

Counts yesterday were:

Hemoglobin 10.4
Platelet 344
ANC 2290

So we are still in a good range. The MRI went off well yesterday morning. It was early (8:20) so that meant that we didn't have long to wait until we were able to eat...always a bonus. We should have the results later today. My nervousness about that has subsided quite a bit, it is definitely something that is completely out of my hands...so I will deal with it when it comes.

I am assuming that with Eli's counts being as high as they have been that we will increase his dosage of the chemo in the next few weeks. Hopefully that won't really bring him down. I am not sure if they do that in tiny incriments or take a huge step and then scale back if need be. Again, there is so much that the docs don't seem to know!!

Halloween was such a joy!! I will post a pic as soon as I download off of my camera. As my neighbor Catherine said, it was amazing to see Eli running around with everyone having such a great time. We went with all of the other kids, then we took the three small guys on a shorter route and then home. It was about perfect. I think the holidays are going to be a little more emotional for me this year....first I think about where we were this time last year (without knowing anything about ALL, cancer, or the like)...then I think about where we were in January...I am truly blessed!!!

Please pray for the family of Tia Newsome. Tia was the wife of a friend of John's from high school. She died yesterday of colon cancer and leaves behind three small boys..what a tough time for this family. May God please grant them the peace that we know only He can give....

Also pray for the family of my Godfather, Pablo. He died of an apparent heart attack this past week. My dad has gone to the DR for the funeral. It was very unexpected and I know the family is grieving.

Thanks for checking in. I will let you know about the MRI as soon as I know.

Maria

I am thankful that we were able to enjoy Halloween!!!!