Save Jace

Tomorrow is Jaces last entire brain-spinal cavity radiation treatment. Alot of the symptoms have shown up just since my last update last week.

His hair is starting to come out now in clumps. You can see very thin spots on the back of his head and the top is coming out quickly also. When he is tired or irritated, I always run my fingers through his hair and sooth him. But he now complains that it hurts him and asks me to stop. Its for the better though anyhow, since every time I ran my fingers through his hair, more came out. On the thin spots on his head you can see lots of redness. Also on the back of his neck and down his back its getting pink. There are some scabs in the top of his head which I noticed this evening after I put him to bed. That may be the caues of his discomfort. His counts have dropped some also, but nothing in the danger zone.

We are lucky though, tomorrow is his last treatment like this and so it should not get any worse as far as the redness and the scabbing.

He is still very active and his attitude is normal, however I have noticed increase lengths of his naps. He is takign longer naps throughout the afternoons and still sleeping all night. So he is tired. And the energy he exhalts when he plays is wearing him out faster.

Still happy, still laughing, still Jace. 

We had a really rough day on Monday as he had to be sedated twice. The only cause of that is since he can’t have anything to eat or drink until after sedation and they had it scheduled for 1PM. So anyone in his view with a cup or with food he wanted some and that was difficult for both of us. We got through and he ate like a champ when he woke up around 2:15.

Tuesday they did a vision test on Jace and told me he had great vision and no problems. 20/20 was what they said and are only concerned about a blur spot he might have above his left eye to the left. But the Dr said it might be something he has had since birth and nothing of great concern. (It might also be a bored 3 year old not wanting to tell the Dr how many fingers she was holding up after 30 minutes….just my opinion).

Today he had that knowledge test and though I dont have any of the results yet, I can tell you that the Dr put lots of notes in her margins as he surprised her many times. It was great fun and I think he did great. The test is set up to be based on 3 through 8 year olds and there was a lot of stuff that I thought he wouldnt know yet and he did. I think he surprised her too.

Tomorrow is, like I said, the last treatment for this kind of radiation and then on Friday we start the proton radiation.

We are VERY excited as this weekend we get to go home and see daddy. Two weeks is just really a long time and Jace does not really understand why he can’t see him whenever he wants to. Though he can call him anytime (and does) its still hard for him to comprehend and he misses his daddy lots. I do too, for that.

So we are happy and thrilled that we get to go home in 2 more sleeps!

I will keep you posted on Jace. He is still doing great and only now starting to feel some of the things from radiation. The Dr told me that the proton radiation is alot less on their bodies and the symptoms will start to go away. That is good news. I’m just glad we dont have 30 of these treatments.

God Bless each and every one of you and we will talk to you soon.

Have a great rest of the week.
Joshua, Jamie and Jace Sandoval

Hey all!

We just finished week two of Jace’s radiation. Jace is doing fantastic. He is ALWAYS thrilled on Fridays since they take his metaport (called a port-a-cath here) out. They access him with the needle on Monday morning and since they sedate him everyday, they just leave it in all week. Fridays are exciting cause when he wakes up its gone. He reaches down, pulls the band-aide off and says…”I’m all done, momma.”

Thanks to a wonderful tip from a close friend, we have been giving Jace his anti-nauseau meds every night 30 minutes before his chemo and that has done the trick. There was none this week…that makes life easier on me and the 45 minute car ride every morning. And on Jace, I’m sure.

They said that he might start to get small burn marks on his skin from the radiation, and I have yet to see any such marks. There is no redness at all down his spine, let alone any blistering…

His hair is thinning a little bit, but there are no patches or bald spots of any kind. I can’t really tell if there is any change or if his hair is just thin naturally. Mine is…who knows?

His activity level is NORMAL. He is active and crazy just as normal. He dances around and acts like Jace….I think radiation is making ME tired, not him…. It is absolutely a blessing and this proves only God is in control of Jace.

I believe 100% that our prayers are being answered and that God is guiding the radiation every single second it is on Jace. Every day when he goes back into the room, I get to hold him until he is sedated. And every single day, I say a prayer that God guides the radiation to only radiate the bad and to leave the good cells alone. I believe he is answering our prayers.

With the finish of this week, Jace has had 9 days of radiation. He is only getting 13 total of the entire brain and spine. That will put us through next Thursday and then on Friday he will start the proton therapy. He will receive 18 of that treatment, but it will be the beam we originally discussed back in the beginning. More focused on the tumor areas and a higher dosage of radiation.

Since the proton therapy is on a different machine in a completely different building, they have to do simulation on Jace. So Monday, the 28th, will be a busy day for us. Please say a little prayer as he will be sedated early that morning for radiation, and then again around 1PM for the proton simulation. Since he cannot have any food or drink before sedation, its going to be a long morning. Rest assured he will probably order 1 of everything on the menu, wherever we go when he wakes up as his appetite has not faltered any since starting treatments.

Next Wednesday they are going to test Jace on his knowledge. Just your basic skills that a 3 year old knows, colors, shapes, letters, numbers…they like to test kids before and after radiation to track results I guess. I am interested to find out the results of this test on him….lol. I will hopefully know those results by my next update so I can share that info with you too…

Week 2 down…5 to go.
With God as our Guide and Jace as our leader, we will get through this.

Here are some pictures of our day:
This is Jace waiting to go back before radiation…he likes to put puzzles together.

This is how I hold him during sedation. The milky white substance going into his port a cath is the meds to sedate him.

This is the last thing I see before I leave the room.

After treatment, I wait about 30 minutes before trying to wake him up. Then I give him some food and drink and we wait around until he is awake enough to sit up in the car. This picture was taken one day AFTER treatment waiting for our car at the valet….
Yes….typical Jace!

God Bless each of you.
Til next week.
Joshua, Jamie and Jace Sandoval

We have had 3 treatments of radiation so far. We found out that we will be here in Houston for a total of 7 weeks of treatment. This is week 1. Jace is taking it like he takes everything. He is reacting very well and has not had any naseau yet. The Radiologist said that if he was going to get naseau from the treatment he would get it right away and it would not take any time, so since he has not gotten it yet, he probably wont from the radiation.

He is however, getting sick from the chemo. He takes it every night about half an hour before bed. He has thrown up 4 times total since we started giving it to him last Thursday night. Its kind of scary with the random vomiting as this is how all of this came about back in January of last year.

Josh posed a question to me yesterday for the radiologist which in turn got us a surprising response. He wanted to know if they were doing radiation on the spine right now, what were they doing to directly treat the “New growth” in his brain. When I asked the Dr, she informed me that Jace was getting radiation to his brain and spinal cavity in the entirety. So he is not getting any kind of beam radiation right now, he is just getting regular entire radiation to his brain and spine. The risks are greater in this kind of radiation, but he will only be getting 13 treatments of it. It is also a lower dosage than the proton radiation. I don’t think we fully understood this when they talked about it last week. But we do now. And it helps to know that he is being treated entirely. Continued prayers and Gods hand will guide this radiation to the right place so that Jace will not be affected in anyway.

After the 13 treatments are finished, he will then go on to get the 18 proton radiation treatments which will be more powerful and directed strongly in the tumor areas of the brain. These are the more precise machines which can generalize specific areas and attack the cancer cells he does have.

We have been prepping Jace for his hair loss, as the Doctor informed me that he will probably start losing it as soon as the end of the second week. She also told me he will probably start to get the radiation marks along his spine which are a “tanning” spot on his skin. I am glad to be prepared for this before I just notice them all happening.

Jace is a trooper. He has already won the hearts of his doctors, nurses and everyone else he comes in contact with here at MD Anderson, as you can imagine. He is a strong little guy and has the fight in him to beat this. With God on our sides, we will prevail.

God bless each and every one of you and I will try and update as much as possible throughout his treatment.

Here are some pictures of Jace with his port a cath accessed. This is what it looks like Mon-Fri. And also the markings on his back for his spinal radiation. There are none on his head, as he uses a mesh mask while sedated. We call them tattoos. If you ask him, he’ll show you and tell you they are purple and red.

Just wanted to send out a note that Jace officially started his Radiation Treatments this morning at 8:00am! Please say a little prayer for him this morning or as soon as you can!

God Bless Each and Everyone of You,
Joshua

So, what was to be a routine check in with Jace’s Houston Oncologist turned out to be a 10 hour day!!! We went through so many rollercoasters of emotions and so much different information!

We were in the room visiting with the Oncologist as he proceeds to tell us that we are gonna give Jace a liquid chemo when he starts his radiation… answering questions… yadda yadda yadda…. he walks out and Jamie receives a phone call…

It’s the Radiation Center… The machine that Jace was going to be getting his treatments from has broken and his simulation was canceled… “ARE YOU KIDDING?!?!?!” As we have seen in the past, Jace didn’t have time to wait around for this machine to get fixed, cause we’ve seen how aggressive this cancer can be! So the only thing that kept going through our mind was… What would happen if we waited too long?!?!?

We went from hoping to start radiation, to not having it for 2 weeks, and then from having to start up his chemotherapy again to try and control anything that might be growing till we can get him into radiation… (Proton Radiation), and we also didn’t know was this chemotherapy going to take place in Houston??? If so, we wanted to do it back home In Corpus… and then all of a sudden, we were back at square one and even more lost than before!

I’ll tell you one thing, the Dr’s at MD Anderson, definitely don’t waste anytime…. As we were sitting in the waiting room getting impatient, roughly a 4 minute wait, they pull us back into the room and both the Oncologist and Radiologist walk in… Wow, both Dr’s… and WITH A PLAN!!!

We were presented with Electron Radiation for some of the radiation areas that they were going to cover anyways and then around the time that the Proton Machine was to get fixed, Jace would be ready to have the “Effected Area” Radiated with the Proton Machine! So, we are now back on track.

Thursday Morning we will go in for Electron Radiation Simulation and then on Friday Morning they are going to run a Spinal Tap to check his CSF and Access his Omaya Reservoir to check that CSF as well! and then from what we were told, Jace will start his Radiation on Monday July 14th…. (CSF = Cerebral Spinal Fluid)

As some of y’all might remember from the very beginning, we were presented with a “Special” kind of Chemotherapy called Anthracycling…. well one of the Dr’s that was part of that Protocol is Jace’s Houston Oncologist, so today meeting this Dr for the first time was kind of surreal, cause if it wasn’t for this study being presented to Jace’s VERY FIRST Oncologist, I don’t think we would have had the success that we did with Chemo…. Remember the “Special” Chemo Protocol was presented “OUT OF THE BLUE” to us 4 days before he was to start chemo…. A Sign From God??? I Truly Believe!!!!!!

This Oncologist examined and looked at Jace in amazement…. asking us over and over……”With the first 4 rounds… with the (HEAVY STUFF) they never lowered the doses????” and we repeated 4 times… “No sir, they never did!!!” and he was speechless! He asked, “How is his speech, motor skills, walking, and other things?” So Jace starts to have a conversation with the Dr… Runs down the hall of the hospital and back…. and we tell the Dr. that he counts in Spanish…. and knows the majority of his alphabet in sign language as well as some other signs, His Heart Tests Have Come Back Fine, His Audiology Test (Hearing) have improved each time, and so on! He couldn’t believe it! He had that look like, this kid shouldn’t even be here cause of the severity of the chemo he received!!! Well, when God is in control… Anything is possible!

This Oncologist also told us, that from what he has seen in Jace’s Scans… that he isn’t 100% that the “enhancement” in Jace’s MRI Slides is Reaccurance!!! Oh Praise god fro being able to hear that! It’s not for sure that he is correct, but just with that statement alone, it gave Jamie and I a little chance to catch our breath!!!

So, from what I can tell, we start the 2nd Part of Jace’s Journey tomorrow with the Simulation, Friday with some Labs, and Ultimately Start Up on Monday July 14!!!

Thank You to All Of You For Your Prayers!!! There definetely is Power in Prayer!

And remember what Our Lord Jesus Christ said….. “Where two or three are gathered together in my name, there am I in the midst of them!!!!” — Amen!

Saint Peregrine (Patron Saint of Cancer), Saint Jude (Saint of Lost Causes), Saint Rita (Saint of The Impossible) — PRAY FOR US!!!!!!

Love To All and God Bless,
Joshua, Jamie, and Jace Sandoval

Ok, so it’s been 24 hours and we have already heard from the Doctors. We spoke to Jace’s Oncologist from Corpus and he said that we are going to go ahead as planned!

We spoke with Dr. Mahajan and she said that in yesterdays board meeting that out of 10 Dr’s that all 10 said that we needed to just go ahead and start radiation as soon as possible and that the “enhanced area” was just too small to bother having to cut Jace open to resect and that it would ultimately push back the time that we could start radiation cause we would have to wait for him to heel…..

So, No Surgery! As of yet…. and hopefully it will stay that way! We are possibly looking at a Monday July 14 start Time for Radiation, but we will find all that out tomorrow at Jace’s Simulation…

Thank You all for the Prayers and Keeping Jace in your thoughts!

We will let you know more as soon as we know more!

Love and God Bless,
Joshua, Jamie, and Jace

Well, here we are in Houston and we had Jace’s First Consultation with the Radiologist Dr. Mahajan. We know that each and everyone of you have been praying for Jace for the past year and those prayers have been greatly appreciated!

But Jamie and I ask that you say a little extra prayer tonight!!!

We found out this morning that Jace has a minor growth roughly 1/2 inch x 1/5 inch and they are referring to it as “Reoccurring Disease”. So, what we thought would be a routine visit to the Radiologist for a consultation has turned out to be a meeting to let us know that there are other steps that we are going to have to take before we start radiation!

Now granted, they aren’t “Certain” that this is what the enhancement in the MRI is, but there isn’t much more that it can be!

Dr. Mahajan and other Dr’s that form a board will be looking over all of Jace’s information that they have received and will let us know what they believe might be the best action to take. So, we are patiently waiting to hear their opinion and we will act as soon as possible on whatever is decided!

The plan right now is to either do a Craniotomy to remove the growth or to pull a sample and run a biopsy. Also they will more than likely pull fluid from his Omaya Reservoir to check for “cell activity” which will keep Jace from having to get a spinal tap! On a good note, his Spine MRI came back completely clean!

Tomorrow we should find out whether or not we will be coming home for the surgery, or staying here in Houston to do it! We have been extremely fortunate up to this point and I have faith that things will continue to keep on an upward path!

Jamie’s Brother put it best which was a reminder about this whole situation from the Get Go… he said “Jamie, the chemo was supposed to keep Jace alive long enough to reach the age of 3 so they could radiate” Well the Prayers and Medicine worked and the “Ultimate Surgeon Upstairs” has brought us this far and he will continue the guide Jace, Jamie, Me, all of you, as well as the Dr’s, Nurses, and Others involved.

We ask that you keep Jace in your thoughts and say a quick little extra prayer wherever you may be tonight!

Leave it to Jace to make this whole situation that much more interesting!

We will keep everyone up to date as soon as we know more information!!!

Love to All and God Bless,
Joshua, Jamie, and Jace

Mr. Independent!

Jace and I totally rode the ferris wheel and now thats all he talks about….

We went to a Hooks game and just wanted to share some pictures!

Playing baseball with, yes, a beer bottle!!!

We took family Portraits before we went to MD Anderson.
Here they are: