Save Jace

So its Tuesday night and we are still here. Jace has been through the first 4 days of his chemo. He has been doing fairly well with the chemo. There has been some vomiting and fever a few times. He has a cough that wont go away when it gets too cool in the room, and sweating that wont stop if we turn the air up. But mostly he just sleeps. Today he finally got out of bed for a little while and got on his feet. It has been 3 days and he was very wobbly.

He has no appetite, which they say is normal. Course when the pump as much liquid through his body as they have been, who could be hungry. We were supposed to go home today, but they said he wasn’t eating enough to take him off the fluids and they were worried that he wouldnt be able to get around since he hadn’t been out of bed. We finally got him to eat some food, black olives, his favorite and some crackers…it was not much, but it was food. Course all he does with food in his system is throw it back up…and he probably knows that. (I wouldnt eat either).

We were informed that we have to learn to give him a shot. The revival shot. He has to have it for 3 days every time after he chemo stint. Its to help repair his body platelets. The expected timeframe is about 9 or 10 days when his white blood count drops drastically.

I’m not sure what I’m going to do and I have been procrastinating entirely TOO long. I have been trying to work as much as possible and have even been working from the hospital. I have my phone transfered to my cell phone. its not been too difficult. I can work at nigh when Jace goes to sleep and then just turn on the laptop in the morning and email everything off before he wakes up.

I’m just rambling and I know it, probably not making any sense either.

I HATE THIS!!!! I want someone to wake me up. To tell me that everything from January 31st has been a dream. That this disease is not infecting us. I want it to go away.

But its not going away. Its here and it is burning a hole in my heart. And my baby is sick and stuck in a metal crib that screams at you everytime you lower the sides. With tubes sending toxic poisons into his body killing the cells that are making his body grow just to kill off a disease that is consuming his body faster than it takes me to get a cold.

And you know what it boils down to.
There is absolutely Nothing I can do about it.

There is a girl here, Dolores. Her baby is in PICU. He is 5. His name is Moses. We were in PICU together the first time Jace had his brain surgery. When we all stood around the ICU Waiting room and prayed together as strangers for our families. Tomorrow they will take Moses’ tubes out and let God decide his fate. Pray for a miracle for Dolores that Moses wants to get better and go home. She cried with me. She is terrified that they will take the tubes out and his body wont work and he will die. And that is a possibility. A probablity actually.

The lady in the room next to me, has her 16 year old son here with Leukemia. Cancer of the Blood. 16 years old. Completely aware of what is going on around him. They are giving him medicines that are reacting with his body and making him violent. He screams and curses at her. She has cried with me while out smoking our cigarettes that he has even choked her and grabbed at her. She is not used to the violence. She said he has strokes at least once a week and his body is fighting the chemo.

There is a baby in the room on the other side of me, I dont know anything about, they just got here today. But their baby cries and I rememebr the sound. Jace couldnt have been more than 4 or 5 months old. The cry just sounds tiny and I dont want to imagine.

And theres more. More families that we are getting to know here. More moms I meet while we take our “breaks” out in the front of the hospital. While our babies are laying up here in these beds.

Its a whole new world here in the hospital. A world that is becoming all to familiar and will only be more and more familiar to us in the next year.

Last night Jace pulled his metaport out. Just reached down and yanked it. Luckily he wasn’t on chemo anymore, it was only the flush. otherwise it could have burned his skin, at least. It took them a few times to get it back in but they finally did. Then he was neurotic about it for a few hours, trying to pull it and take it out. he kept saying all done all done.

Maybe we’ll go home tomorrow.

Chemo cycle 28 days.

Doxorubicin day 1,2 and 3
Dactinomycin day 1
Cisplatin day 4
Vincristine day 8 and 15
Methatrexate day 1,2,3 and 4.

I should attempt to get some rest before the clanking starts again. At least they dont have to flush his IV every hour tonight.

Goodnight all - God Bless!
Jamie

So I’m sitting here at the hospital on Saturday night wondering what the heck has been going on this past month and a half.  Wondering where life went wrong and when it is going to change. Jace is sleeping as peaceful as he can with tubes of chemo being sent into his blood.

We got here Friday morning.  The MRI was scheduled for 10AM and as hospitals go, they were running late.  They got started around 11.  But he went through great and came out as groggy as usual.  We immediately got put in a room since they were expecting us.  I should log the rooms we have been in now.  Even though its already exceeded 7, I dont remember most of them…but this one is 423.

They gave him his first dose of chemo sometime in the afternoon and then started the 12 hour drip at 6PM.  He was playing as usual and getting into everything he possibly could.  Some things just dont change.  Friday evening he got sick once, as was to be expected but I was not fully prepared for.  I think the reality of it all just kind of sank in when he got sick on the first night.

Staying on this floor is much different from the others.  When we have been here in the past, we would usually go to sleep around 10 and that would be it for the rest of the evening.  Here, the cancer floor, they come in pretty often all through the night, checking vitals and flushing his IV to make sure the chemo is still going directly into his veins.  Apparently if the chemo goes somewhere else, not in the veins, then it can burn the skin and cause complications.  So we get minimal sleep here.

This morning they brought breakfast and he ate it down.  But he got sick again.  Of course typical Jace, and anyone who knows him…he wanted more food.  To now, those are the only times he got sick.

I met with the Dr sometime around noon.  He just informed me more about the side effects of chemo and the normalcy of some of the things that go on on this floor.  From now on, I am to wear gloves whenever changing his diaper or wiping his nose.  The chemo is excreted through bodily fluids.  Soon, even if he cries, his tears could be orange from the red chemo.  That will scare me.

When the Dr was getting ready to leave from our visit I remembered to ask him about the results of the MRI.  If EVER there was a deer in the headlights look, I just received it.  I knew there was bad news.  JUST by the look on his face.  Almost like he was dreading me asking and was trying his best to answer my questions and get out of there before i could.  But I did.

And what he told me, of course devastated me.  And what I saw is something I never could have imagined.  There is a new tumor.  New growth in a completely different spot.  Below the original baseball sized tumor and almost the same size.  This one is 3 inches in diameter and located below and behind the original tumor.  1/3 the width of his tiny brain. 

The Gliadel Wafers that the Surgeon put in the first resection are obviously working because when you start looking at the MRI pictures. The first resection is on the top right frontal lobe and its a good picture. Clean resection with the little black dots that are the wafers and nothing in the contrast that was not to be expected. Some scar tissue where the first and second tumors were removed. But then when you go a little deeper in the MRI, BAM. Another 3 inch diameter tumor staring back at us as big and as scary as the first one. I asked the Dr what that meant and he said the same thing we have been hearing since day one…how aggressive and how scary this cancer really is. That every day is a gift and every month is another miracle. 2 WEEKS!!!! 2 WEEKS!!!! And this thing grew 3 inches that quickly. He described this cancer like mushrooms.

“One night your there in your house and you see its raining, and the next morning you get up to see your back yard covered in mushrooms.”

What we do now.  Finish this first treatment and see if the chemotherapy can slow this massive thing down any.  Hopefully, it can shrink it as it is now pressing on the center of his brain.  After we finish this treatment we will see what the results are and go from here.  Hopefully, hopefully, hopefully we finally get some kind of good news. The MRI they did yesterday was only of the brain, so we are unsure of spreading anywhere else.  The fact that this tumor grew 3 inches in 2 weeks and completely separate from the original is scary.  But we are hopeful that it has again only remained there in the brain.

We pray again.  We see where this road is taking us and we follow it, faithfully and committed to beating it.

God Bless us all!
Jamie

So Tuesday night the 6th Jace was running a small fever off and on.  I was worried a little bit but gave him some tylenol and watched.  It got up to around 102.6 and he was really hot.  We took his socks and shirt off and tried to let his body cool off, really all he wanted to do was sleep, so we let him.

Wednesday morning around 6 he came walking into our bedroom.  They had rescheduled his surgery for noon so we didnt actually have to be at the hospital til 10.  So we pulled him up in bed with us and he was steaming.  Took his temperature and it was 103.5.  I KNEW that they would send us home and not do the surgery that day, so I called up their and talked to the nurse.  She said she had to call the neurosurgeon, even though she was pretty positive, like me, that they would reschedule it.  Well about 30 minutes later, the neurosurgeon called me at home and said “Hey I hear my little buddy has a fever.”  I said yes and told him the story.  He told me just to take him into his pediatrician and get clearance for surgery just to make sure that there was nothing really wrong like the flu or anything.  He said, “I;m a great neurosurgeon but a really bad pediatrician.”  lol.

We got an appt at 3 and the Dr said that it was probably just a little bug and that he was ok with them doing the surgery if they were ok doing the surgery on fever.  He said the only complications that could possibly arise were that after surgery they wouldnt know if the fever was from the bug or from the surgery, but they would treat it either way…so go ahead.

I called the neurosurgeon and they rescheduled for Friday the 9th.  At 7AM.  Which meant we had to be at the hospital at 5AM.  Better than telling a toddler he can’t eat in the morning and arriving at 10AM.

So surgery went as planned.  It started around 9AM and they were done within an hour.  They removed a golf ball size tumor this time. We found out they were inserting some Gliadel wafers directly into the resection so that chemo could directly be put ont he spot.  These Gliadel wafers are time capsulated wafers that send off secretions of chemotherapy directly into the spot.  This kind doesnt go into the bloodline.

He was in a lot of pain Friday so they kept the morphine coming, and he was really pissed that he was stuck in the bed again, but other than that, he was doing ok.  I stayed with all day and til he fell asleep around 9:30.  When they are in ICU, its almost ridiculous for me to stay there since he has a night nurse directly appointed to him and my only bed is a rocking chair.  I decided to go home and get some rest so I could be with him in the hospital.

When I got there Saturday morning.  He was just waking up.  he was cranky and the nurse asked me if he needed morphine.  But when I looked in his eyes, his eyes were clear.  He didnt seem to be in pain to me, just cranky.  So I said no, lets just let him wake up.  A few hours later the resident Dr on the floor came by and they checked his blood count and it was down to 7 from 11 before surgery.  They wanted to do a blood transfusion…but the actual Dr came back on the floor and said, “Obviously you dont know this kid, take him off the IV and get him some food and he will heal himself.”

And he did.

We were in our room by Saturday afternoon.  They removed the brain drain and the head bandage.  The nurse took out his ART line.  When we got up to our room, I convinced the night nurse to take out one of his IVs since he hadn’t had any meds or fluids through his IV since noon, and did they really need two of them.  By the next morning, we had convinced the morning nurse to remove the other one so he was completely IV free.  Well he thought this meant freedom so my child began running up and down the hallways.  To the playroom, to the front lobby (of our floor), to play with the trains and the balls.  He was crazy.

When the neurosurgeon came up to the floor, he said allright let me see how this little guy is doing.  I put Jace on the floor and he turned around towards me and put his arms in the air and said up…but I had moved.  It was my dads friend and Jace took one look at him and ran out the door and bolted down the hallway towards the playroom…full speed.  The neurosurgeon poked his head out of the room and yelled after him….”Hey Mr personality…didn’t anyone tell you, you just had brain surgery two days ago.”

Needless to say he let us go home.

So we get the staples out on Tuesday.  And we are also going to meet with the Oncologist who is going to tell us about a stronger chemo that he is wanting to put Jace on.  Apparently the one he had originally talked to us about isn’t getting many good results with the ATRT and he has some other things to show us about a study that is going on right now in Europe.  So we will find out about this chemo on Tuesday…but we do know it is “stronger and harsher” with the “stronger and harsher” results and side effects.

I have been crying all day.

They want to start his first round of chemo on Thursday. We’ll find out more on Tuesday.
Jamie

Jaces brain surgery is scheduled for tomorrow (Wednesday)morning at 8AM.  We have to be in the hospital at 6AM and the surgery will start at 8AM.  Please pray for him during that time,that he gets through this as before and the recovery is just as smooth.

Thanks!
Jamie