Save Jace

Today was Jace’s last Radiation treatment. 38 down!! None to go! We made it. Radiation did not stop his spirit, it did not even slow him down. Go JACE!!!

Our last week in Houston went as fast as we thought it would. Monday was Drs appts as usual, although this time we were saying all our goodbyes and taking pictures. There are so many wonderful and amazing people at MD Anderson and at the Proton Center. Although, we were sad to say good-bye to our new friends, we were thrilled to be coming home where we belong.

Thursday was Jace’s celebration day. We took lots of pictures. I thought it would be easier to put them in a picture slideshow than listing a big long list of pictures here. The celebration that the Proton center does for the children is amazing. Its like a little graduation. The get a certificate and a hat and they get to hit the “gong” in the hallway. Every day as we went in for treatment, Jace would ask about the gong. And I woudl tell him, well baby you get to hit that as soon as your all finished.

Well they usually want to do the celbration before treatment for the kids since afterwards they are groggy and still a little sleepy, however Jace was having no part in this. He knew that he was not finished yet, and kept saying, “No, not yet.” So we went on through treatment and let him do it afterwards. He was still shy and didn’t want to hit it, but at least we got a little hit out of him.

A tradition was started where the kids get to pick an animal from the fountain and write their name on it and their last day fo treatment, Jace picked the cougar. And we put it back with all the other kids who have graduated.

There are some pictures of his treatment as well on here. This was done everyday while we were in Houston, I didnt realize how hard they are to look at, I guess after 38 treatments, I just got immune to it all.

You have to understand the amazing people that work in the Centers for these kids. Everyday, everyone has smiles and welcoming words for them. It seems as though they learn to love these kids in the short time that they have with them. I know, Jace felt it. As did I.

This is a little story of our treatment up in Houston through pictures.

The proton center called us this morning and the machine is down. So even though we got a day off today, it only adds an extra day to the end of his treatment. That puts us finishing up next Thursday instead of Wednesday….only 1 more day, I know…..

Our babysitter, Ashley has been with us since Jace was born. She takes tons and tons of pictures everytime she babysits and goes with us on the many things we take Jace to do. She created this video of him with random pictures taken over the last few years and I thought I would share it with everyone since it is our Motto.

We will LIVESTRONG!

Jace

Music by Wideawake
Maybe Tonight
Words:
I heard the news today.
It came out of nowhere.
I wish I could run away,
but where would I go?
Is this my destiny?
Something so unfair…
What will become of me?
God only knows.

And they say the road to heaven might lead us back through hell.
Maybe tonight, maybe tomorrow,
we will win this fight and bury this sorrow.
We’re so alive, still holding on, not ready to die,
so we LIVESTRONG.

My pride is left for dead,
as my world gets shaken.
The thoughts inside my head
are so hard to control.
I am staring down the unknown,
but one thing is certain.
You could break my body,
but you will never break my soul.

And they say the road to heaven might leads us back through hell,
but we’re holding on for more than stories to tell.
Maybe tonight, maybe tomorrow,
we will win this fight and bury this sorrow.
We’re so alive, still holding on, not ready to die,
so we LIVESTRONG.

This past weekend was really nice. Jace and I went back to Corpus for the weekend. Its so nice to be home, but so hard to leave again. We got to do alot this weekend though. Friday night in Corpus Christi was the Relay For Life which was FUN! Jace had a blast!!! Here are some pictures of him. He literally RAN around the outside of the baseball field at the Hooks stadium twice during the survivor walk. He had a great time waving to all the people in the stands. It was definitely a great night for him.

Mommy, Jace and Nanny


Jace before the Survivor Walk


Daddy, Jace and Mommy (with baby bump) walking the first survivor lap


Jace took off running that first lap…daddy was right behind…


Jace and daddy in a full run…


Jace waving at all the people in the stands


Jace posing with some beads from someone in the stands.


Daddy, Jace and Mommy during the 2nd lap…


Jace playing with Nana….typical Jace face!!!

We met with the Drs again today. The cream the radiologist gave us last week is working great on the burns on the back of Jaces neck and back. The results now look like the end of a really bad sunburn. He is telling me it itches alot, which is good cause that means the skin is healing. I just keep applying the cream to keep it from bothering him. He is still getting the radiation on the top of his head, so those burns are still fresh. But I am applying the cream there and hopefully they will heal just as quickly. 27 down…..7 more to go!! Can you believe it already???

The Oncologist is pleased that Jace’s counts have all come up out of the danger zones. The blood transfusion last week did what it was supposed to. His energy and appetite were both rejuvenated as we can tell from the growth charts. He is now weighing in at around 34 lbs and 38 inches tall. A few, including his platelets are still kind of low, but nothing they are concerned with right now. All of them are making their way up.

Right now the plan is to finish up here and then head home for all the follow up MRIs and reports. They are talking about taking a two week break between this treatment (radiation and chemo) and then possibly starting a new chemo treatment right away. This is all based on what the two Oncologists agree on and is still with the implication that there is a recurrence. We will just have to wait to hear from our Oncologist at home, what they decide on that. It also might depend on the follow up MRI and how quickly they get those results after treatment.

Thank you so much for all of your prayers and comments. All of your support is what keeps us going here. I appreciate it so much!!!

God Bless
Have a great week!
Joshua, Jamie and Jace

Hi All!

Jace is doing well this week. Last weekend Josh came to Houston and that was nice. We took Jace back to the water park which he loves, here are a couple of pictures. In the one where he is running away from us, you can see the burns down his back. The closeup is at dinner over the weekend while daddy was in town. The last picture was taken today, after radiation. Jace is NPO so when he wakes up from treatment, we sit out in the lobby and he gets his food. You can see the scarring on the front of his head in that picture.

Jace at Dinner

Jace with Mommy

Jace with Daddy

Jace running around the water park

Running away from us

Creating his name with beads and posing

And this one is taken today 08-14-08 after treatment

Last Week:
Monday was a hectic 11 hour day at the hospital as we had all our Drs Appts, plus he did end up having his very first red blood transfusion.

We first met with the Radiologist who was concerned about the scabs and burning on the back of Jaces neck. She prescribed some prescription medication for his back instead of just the lotion they recommend. The top of his head is starting to turn a little brown and already has a scab starting on it also…besides the itching, neither of them seem to bother him too badly. I put the cream twice a day and in only a few days it seems to be working on the back of his neck for sure.

Radiation is going well and I think Jace is even getting used to it. We have the same anesthesiology team every day and he now walks into the room by himself instead of running the other direction. He walks in everyday and greets his team with a big “hello again!” When he is about to be sedated I pick him up and sit on the table to cradle him so when he falls asleep he is secure. Well today, I got on the table before him and he was standing below me and says “Momma you forgot me.” 23 down, 9 to go! Can you believe it???

The oncologist was concerned about Jaces counts coming down over last week even though he was off the heavy radiation and we also took him off the chemo for a week. But if we stick to the original 10 day cycle, where his counts drop off at day 10, then Sunday would have been it…and that all makes sense. So they gave him the red blood transfusion on Monday. it was a 3 hour process, that basically involved Jace and I sitting in a little room on a bed watching Diego and eating room service hospital lunch.

We simply call anything that they hook up to Jace through his mediport medicine, and a few times he would grab the line and say “Momma, I dont need this medicine.” But once I hid it under his blanket we seemed to be fine. About halfway through the transfusion, the nurse came in and told me that the transfusion would help him with bringing his energy and appetite back up. But as we know, he hasn’t lost much energy…and guess what….the blood transfusion only gave him MORE energy.

Today marks Josh and my 4 year Anniversary. And though we dont get to spend today together, we are excited to be coming home for the weekend. We have alot to celebrate. In only 4 short years, SO much has happened that has brought Josh and I closer to God and closer to each other.

Everything else has been going pretty well too, and for the many that have been asking, the pregnancy is going great! I am tired alot, but I think that would be expected with all we are doing even if I wasn’t pregnant. He is moving alot and that resassures me since I haven’t been to see my Doctor since we left back in July. Its tough going through the little milestones without Josh, and I’m sure he is missing it too. But Jace is really excited. At night when the baby moves, he likes to put his head on my tummy and say “Hey Brother, how are you doing?” And when the baby kicks, Jace laughs and picks his head up and says “Mommy he has the hiccups.” Its really cute.

God bless each and every one of you!
Keep praying that Jace and I both stay strong.

Thank you for all your support!
God Bless!
Joshua, Jamie and Jace

We have a day off today. Due to Eduoard, the tropical storm that was threatening hurricane status here in Houston caused all the hospitals to close precautionary. Though Jace is excited to not have to go to the Dr today, he is less thrilled to be cooped up inside for a rainy day. Yes, I know….he is Jace.

Starting last week Jace started losing his hair. It started coming out in masses by Thursday, and by Friday night it was almost completely gone. Daddy shaved it off Saturday morning while we were home.

We got to see both the radiation and oncology doctors yesterday. The radiation doctor said he is doing fantastic. There are some scabs and burning on his back and the top of his head from the radiation, none of which will be getting any worse, since they are finished with that radiation. She prescribed some medicine for that and it has been soothing for him the last couple of days. He was starting to itch it.

The oncology doctor is concerned about his counts. All of his blood counts have dropped drastically this last week and his hemoglobins are .1 away from needing a blood transfusion. They are 9.1 and the Dr doesnt like them to get below 9.0. Instead of scheduling a blood trasnfusion this week, he decided to take a break from the chemotherapy until Friday and see if they will come up on their own. So since, he has no radiation either today…he is getting a break from everything.

When we go back in for radiation on Wednesday, the Dr just wants me to keep an eye on Jace’s counts and if they get any lower, instead of coming up, he will schedule a blood transfusion before the end of the week. Otherwise, we will meet with him again on Friday and get a blood sample and restart the chemotherapy if all looks good.

Overall we are doing great. The tropical storm was a scare for me, as many of you know I am scared of your little thunder storms. We came to stay with another friend in Houston who lived a little more inland than Joshs Aunt. So we are in Katy right now.

Hope you are all having a great day. We are just sitting around watching the rain. I’ll update more at the end of the week if anything changes.

God Bless
Joshua, Jamie and Jace