Save Jace

February 27, 2007

We got the Prelimenary Results back from the MRI that was taken of the Head… (we are still waiting on the results of the spine) and looking at the Preliminary Head MRI, there is still a Tumor Mass roughly 1 1/2 inches x 1 inch in size. We will wait for the results of the Spine MRI as well as the results from the Bone Marrow Sample and Spinal Tap. We are hoping that all comes back Negative with the other 3. If the Spine MRI comes back with “Activity” then we have already been told that “Surgery” probably wouldn’t help! If the Spine MRI does come back Negative then we will probably be looking at a 2nd Brain Surgery REAL soon!!! (probably next couple of days) The race is on and we’ve already faced some bumpy roads and got through them with the help and support of God, Family, and Friends. Now we are ready to climb any obstacle that is put in front of us! God Bless You All!!!

February 28, 2007 ROUND 2: They did find a tumor mass in Jace’s head that measured roughly 1 1/2 inch x 1 inch. We spoke to the Oncologist and he just informed us that it is “New” mass that has grown in the past month! so now we know that we really are dealing with an aggresive disease! We waited to hear from the Neuro Surgeon to see if he is going to operate again to remove the mass and then we would start chemo therapy right away, or if we are going to just start chemo treatments and hopefully slow down the growth. The Neuro Surgeon finally came in and spoke with us. He said this definetely wouldn’t be the first or last time that he would have had to go back into the head to remove something on a patient! He asked how Jace has been since the last operation and asked if we thought he was ready (body and health wise) for another surgery…. he said exactly what we already knew… go in take it out and start chemo asap! so Jace will be having a 2nd brain surgery on Wednesday March 7th. Thank you all for the prayers and support!!!

Emotionally: drained. Tired.  But still up for the fight.  I mentally prepared myself for everything possible with the news we had.  I was prepared to hear some pretty nasty things with these results, I was never prepared to hear that the tumor had grown back an inch and a half in the last 3 weeks.  Just wasn’t.  Its terrifying to think that in less than a month my “baby” who isn’t supposed to be going through any of this anyway is having his second brain surgery.  The facts aren’t as traumatic as they were though…we know what to expect now.  We know how he will look after surgery and how quickly he recovered from the last one.  We are ready for this….we are.  Next Wednesday he is scheduled to go in and they will take the tumor out again.  While he is under, they will administer his first dose of chemo directly to the spot in the brain and then we will wait for the head to heal and start chemo as soon as possible after so that we can start to fight this thing before it starts to grow back…again.

My baby is so strong.  He is.  He is going to be the amazing one through all of this and it amazes ME everyday to see him. 
Jamie

They are doing a story on Jace on Channel 3 tonight at 10:00.

I don’t do stuff like that very well, so excuse me…Josh was late from work and he wasn’t able to help. 

But I just wanted to let everyone know.
Jamie

Jace had an “Atypical Teratoid/Rhaboid Tumor” It is extremly aggresive!

We met with The Oncologist today and he went over his plan with us. In 10 days Jace will undergo another MRI as well as have a bone marrow sample taken out, a spinal tap done, and have his medi-port put in. The medi-port will be used to administer 4 different agents of Chemotherapy.

Josh did ask if this Tumor was Metastatic and the Dr. said from what we’ve seen so far, it is NOT. Of course he can’t come out and tell us it definately has not, but he “seemed” as hopeful as we are. If the cancer has not spread to the rest of his body, our chances for survival are greatly increased.

Jace will undergo 12 months of Chemotherapy with each session putting him in the Hospital for 4-5 days each time he gets treatments. The plan is to have chemo administered every 4 weeks.

After asking questions and talking to the Dr. there are a few things that are in Jace’s favor… All we need now is to pray for a couple more things to stay in Jace’s favor and it will make things that much more easier! This is going to be a long 12 months with plenty of health ups and downs, but we are preparing ourselves for this long battle!

After yesterday Josh and I are alot more clear on where we stand with this disease and we are ready to fight it. At one point the Dr said, “I am trusting you with his life, just as you should trust me.” The Oncologist we are going with has been in the cancer business 8 years…1 year at MD Anderson, 2 years at St Jude, 2 years at Duke and has spent 3 years here at Driscoll Childrens Hospital. In all his years he has only worked with Pediatric Brain Tumors.

This particular tumor affects only 1% of children across the country! Leave it to our little man to stay as unique as he can - even in brain surgery!

We love each and every one of you that send words of praise and hope our way. We are on our last “waiting period” before this fight starts and we pray that you will all stand by us and pray for us so that after this year we can all celebrate is Jace’s success!!

Jamie

Copied from Jaces page:

There have been a lot of questions asking “What can I/We do to help?”  If you would like to there has been an account set up at Bank of America.  All you would have to do to make a donation is walk into ANY Bank of America in the country and tell them that you would like to Deposit into the “Jace Michael Sandoval Medical Fund” 

The account was set up by a close friend of the family that had people asking what they could do to help as well, so that individual set up the account.  We are not asking you to go and do this, but it is another option for you.  The prayers are pouring in left and right and it shows.  The Lord Jesus Christ is with Jace… as it says in the Bible “When two or three are gathered together in my name, there am I in the midst of them.”

Well now I know what that feeling was….

We went to the Dr’s office and got the staples removed. While we were there we were informed that they got the results from the tumor. It’s not the Glioblastoma that they had originally told us, but a more aggresive tumor called “Atypical Malignant Rhabdoid”… We are waiting to talk to the Oncologist in the next couple of days and then we will make a decision to have Jace treated here or at MD Anderson in Houston. Please now more than ever pray for us, as this is destined to be the toughest and longest battle that we will have to face! Thank you for all the prayers up till now and have Faith and Hope and most of all BELIEVE that MIRACLES CAN HAPPEN!!!

Jamie

Jace gets his staples removed today.  We have a Drs appt at 2:00. 

Even though the Dr told us not to be hopeful for any results from pathology…I still have an empty feeling in the bottom of my stomach today.

Jamie

Jace is doing well and recovering great from his surgery.  It looks like he has 18 tiny barettes in his hair since the Dr we had doesnt shave their heads.  He is progressing quickly back to normal.  He gets his staples removed on Tuesday and we were told not to be hopeful for the pathology reports even then.  We should find out more about the cancer in the coming weeks, but until then we are greatful that he is coming back full force with personality and skill. 

Thanks!!
Jamie

We are starting to get more and more of little Jace back.  His personality is coming through in things he says and does.

This morning when I woke up (daddy let me sleep in to get some much needed rest) I walked into the living room and got a big super special MOMMA!!!  It was great and made my day!

Where we stand from here:

Next Tuesday we go back to the Dr to have the staples removed and hopefully we will have the pathology reports then.  But we’re told not to hold our breaths.

As soon as we DO get those results we will go for another MRI to see if the tumor is growing back or the cancer is spreading and we will make our decisions from there. Chemotherapy and what not.

We’re holding strong and its good to see Jace smile again.
Jamie

We are home!
Current mood: grateful

Jace has recovered VERY well from his brain surgery!  We are at home and its really really good to see him smile and live again.  It was draining, as off as this sounds, to see him there lying in the bed so helpless.

Here he has his toys and now many more with the multiples of balloons he recieved.

We have a Drs appt next week to get the 18 staples removed from his head and were told to not even think about the patholists report until then.

We have him home and semi back to normal now and thats enough to make me smile from ear to ear. 

In four weeks we go back for another MRI and see if the cancer is growing again or if they got it all with the first surgery….we are hopeful and optimistic.

Thank you very much for your prayers and thoughts…the support and prayer was as intense and needed as you all thought!

I’ll be updating on him regularly not only for those of you who want to know but also as therapy for me.  I couldnt have stayed as strong without all your kind words and heartfelt prayers.

I cannot say enough how thankful I am for wonderful friends and family and people like all of you!!!

God Bless!
Jamie

Well guys.  What we thought was a terrific end to something turns out to be only the beginning of our long journey.  While Jace is recovering well from his surgery, it turns out that the tumors they found are cancer.

Its an aggressive cancer so your prayers are still desperately needed.  These are preliminary results and though they are not intended to change much, there is still hope for any change for the better.

Because of his age, he is only 21 months old he cannot yet recieve any kind of radiation.  The brain has not fully developed and will not be ready until he is 3.  Even then, they say it will only be about 80%.

We have MANY options.  Chemo looks like the first line of treatment, though we have lots to discuss and pray over as a family in the coming weeks. 

We will know more monday and as they intend to move him from ICU tomorrow, I will be at the hospital with him all weekend while he recovers from the surgery!

Again, thank you for everything and my family and I cherish each and every thought.

God Bless!
Pray Hard! 
Jamie

For those of you that don’t know and those of you that have been there for us for the last two weeks a HUGE thank you from the bottom of my soul!

Two weeks ago Jace got really sick and began throwing up.  We went through Drs appts and calls like crazy trying to find out what was wrong with our baby!!  11 days for a baby throwing up randomly and we couldnt pinpoint the problem.

After 6 days of getting sick and at home meds and strict diet not working we took him to the Dr.  At first they thought it was drainage from his nose…two days later and still getting sick they put him on some medicine for naseau…two more days and they put him on meds for acid reflux and also an infection…still sick.  We switched pediatricians after not getting any results, help or hope and took him in to another Dr.  After examining him he gave us the option of admitting him into the hospital for some tests or setting up appts that could take a couple of weeks.  We chose to admit him and have all the tests and Drs come to us. 

Monday night they did X-Rays on his chest and they came back negative.. They took him off all solids and gave him a liquid diet…still throwing up.  Tuesday night they did an upper GI to scope the reflux and check his esophagus and that came back negative…still throwing up. They took him off liquids and were only giving him the IV.   Wednesday they did an intestinal sonogram and checked all his organs to see if maybe something was wrong there…nothing.  They determined that he had a viral infection and were going to put him back on a regular diet Thursday morning and send us home.

Since he hadn’t been eating anything there was nothing to go through his system and they gave him a suposotory to help him move stuff through his little body.  An hour after that he started having random rashes appear and disappear across him.  THey thought it was a reaction to the supposotory and wanted to just watch it.  After the third time the rash appeared, he looked like he was going to get sick again so Josh and I sat him up.  His little body went limp and so we laid him down.  The rash flooded his body, his tongue was out and his eyes were huge…he was having a seizure. His arms flailed and his body was tense…all of a sudden we were warped into fast paced.  Doctors filled the room and monitors were hooked up.  There was a nurse taking blood from his fingertips and another hooking up the blood pressure to his tiny ankle, a third was attaching heart rate monitors to his chest and Drs were asking all the questions all over again.  My mind was there and I was answering questions as quickly as they were asking them…what seemed like hours was actually only minutes and they had an Intensive Care Doctor in our room. 

His body was lifeless as they checked his eyes…they were shining the flashlight and he was just staring.  I was calling his name and he was not responding.  They were pumping his legs and they were limp as noodles.  The Intensive Care Doctor began CPR and as quickly as he was gone he was back.  Bright eyed and wondering what everyone was doing there.  That only lasted a minute.  He was gone again. 

They hooked the monitors to mobile units and the IC Doctor sent immediate orders for a CT (cat??) scan. They sent us ahead of Jace and began strapping him down.  We watched as he laid locked down in the scanner.  It made him look so tiny and we all felt completely helpless.  I can’t tell you how long we waited for the results but it felt like a month.  I know that immediate family and friends were there in a matter of an hour.  The Dr finally called us back and gave us the results.

It was a brain tumor.  It was the size of the baseball and probably had been growing since he was born.  It looked aggressive and they would perform brain surgery to remove the tumor in less than 24 hours.  He was sent to PICU were he laid lethargic and groggy.  The idea was to dehydrate his body to reduce the swelling around the tumor. 

With the friends and family we had there with us, we had already with less than an hour of knowledge the support of everyone that loved us and Jace as much as possible.  Prayer chains were started all over the city and within hours had reached other states and even countries.  Wednesday night around 12:30 we began the waiting.

Tuesday morning we were supposed to meet with the Dr at 8 am.  When Josh and I got there at 7 we stayed with Jace and just stared at him wondering all the questions that you do wonder when something like this infests your family.  We met with many nurses.  The pediatricians from the beginning of the week all came down and talked to us…though they seemed apologetic, there was nothing better they could have done and were only trying to find the problem.  No one, not them nor us would have thought this in a million years!!!  Anyone who knows Jace agrees.

We finally got word that we would get to meet our Dr around 1PM.  Soon after that they told us that it woudl be closer to 3:30.  Around 1:30 sometime the nurse unexpectedly came and got Josh and I and took us back to meet the Dr. He told us everything he could about the risks, worsts, and problems that this could be.  He told us that this could be over multiple surgeries depending on how he reacted to the meds, the way his brain reacted to the surgery and the pressure from the tumor.  From the results of the CT scan it was leaning more on the malignant side and was causing deep pressure into his tiny growing brain.  The good news: it was on the outer frontal lobe and could be removed without having to go inside his brain too far.  The good news.

They told us he would go for an MRI around 3:30 and go directly from there to surgery which could possible take 4-5 hours.  They would let us know what they could when they could.  With the same support team of immediate family and friends considered family we all held strong.  Mulitple prayers over Jace, over us, and over the Doctors and nurses that performed the surgery…in small groups, large groups and circle prayers we were able to stay strong and focused.  At 1:10 they came out and said they were ready for Jace.  They took him in for the MRI and he was in surgery by 2:15.  When they called us around 4:30 and told us that he was already out of surgery - panic set in…that was only two hours…it was supposed to be 4-5…something went wrong…they are going to have to go back in….Josh and I went back into the PICU were we could only hold each other and wait while they stabilized Jace. 

The DR came to talk us and told us that the surgery went VERY well.  Jace was a strong baby and had done great.  He had removed the entire tumor and they were sending it to Boston to be examined and dissected at the Hopkins center (I don’t know the entire correct name).   The only concern was that the tumor had surrounded a major artery that controlled Jaces legs.  It had sucked blood out of the artery and the Dr said there was no other choice but to remove it.  He told us that it would take 7-10 days before we knew any news…good or bad…whether the tumor was cancerous or not.  He wanted to check his vitals and make sure he was ok before we went in.  Josh and I waited another few minutes only to have the Dr come out and say…”Ya..the whole leg thing, he’s already kicking and wanting out of his bed so no damage there…” (You have to know the Dr).

When Josh and I walked into the room and the second he heard our voices Jace began yelling….”all done, all done, all done…”  as his legs and arms flailed about….Apparently because he had the tumor since he was born, his brain learned to get blood elsewhere and there was no loss from removing that large artery…in fact…the ONLY difference in our little ANGEL was the bandage on his head.  They even told us that they didnt shave his head, just separated his hair and made a clean cut…

He took one look and me and said “Momma.” He took one look at Josh and said “Dada.”  He made it!!!

The power of prayer is an amazing, AMAZING entity of its own.

I want to thank each and every single individual that was there with us throughout the last two days, two weeks…I want to thank each and every person that took any time to pray for us and the many that kept us in their prayers throughout this.

He is in ICU tonight resting FINALLY and Josh and I will return to the hospital tomorrow morning where they will perform another MRI on his brain and his spine to check for results.  We’re only hopeful that everything was removed and he will recover from the surgery quickly. 

The only thing we are waiting on is the results from the tumor.  Please keep Jace in your thoughts and prayers.  He is an AMAZINGLY strong baby!  We are SO thankful and open hearted for everything everyone has done for us.

I will update as soon as I hear anything, as soon as I get another free minute to get back online.

Again thank you all from the bottom of my heart and soul!!!  We are faithful, hopeful and now even more so since our baby proved his strength to us.

God Bless!!

Jamie