Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[GtreetSlide]

Evan went in today again and had another spinal tap and they removed the tube from his heart that came out his arm. Second check still shows no more cancer cells in spine or blood. next week he goes back in to get the port installed under his skin that will let them inject without all that tube hanging out. He has passed the first stage of treatment now with no sign of cancer remaining, but since it was in his spine they plan to do some lower level radiation on his brain to make sure none is hiding up there. he is also going off steroids today. His immune system is kicking butt. Two weeks ago it was a 64, then last week a 3,000, and today it was 11,000. It may drop some with more chemo, but right now it is strong enough that he can fight off almost anything. Plus, if he does get exposed to something and gets a temp, he goes straight in for antibiotic IVs. More test next Monday will probably indicate he can go back to "kiddie school".

Then there will still be regular chemo treatments ongoing as cancers in kids have a tendency to come back and cause a relapse. The drug they normally use later on in treatments for killing off any cancer in a relapse was part of the initial treatment in his case. They want to see if used initially in treatment if it will lessen the chance of relapse or hopefully prevent one. Long road ahead, but he is one brave little guy winning the fight thus far. Still gonna be tough on parents having to take him in for days and up to a week at a time for quite a while.

jimbob

[Chains]

Glad to hear Evan is doing better, will continue our prayers, God Bless

[kb]

God bless the little man. It must be heartbraking to see him go through this. My prayers go out to him and his loved ones.

[pkl]

I've got a couple of grandsons and it would be tough to go through with them. I'm glad he's doing well and I pray for continued progress and hopefully full remission and recovery.

[TheVgirl]

Wow JimBob, that's tough.  Sounds like Evan is a little trooper.  A lot has happened in just a few weeks.  I have four sons and can't imagine going through this with them or a grandchild.  Evan and your family will be in my prayers.
-V

[GtreetSlide]

Thanks everyone.

Tommorow and Tuesday are big days for Evan. He will go back into surgury to put a port for future injections and IVs under the skin on his chest. As the temporary arm port was, it will connect directly to the heart. At this point the cancer in his blood and bone marrow in his spine is 0%. So, he is in the first stage of remmission. However, the original count of Leukemia in his spinal column was 98% to begin with, so even though no sign of cancer appears in any tests now, there is always the possibility that some may be lurking in his brain. After the port surgury, they will do a lower dose radiation treatment on his brain as a precaution. Even in that, there is still significant chance of brain damage as a result. He is super smart for a 4 year old, so I hope it works without damaging side effects.

Maintence chemo will go on weekly for a while, then monthly at some point. Eventually only every three months then, but this process could go on for years. I returned home yesterday to deal with issues here at home. I drove 840 miles of it yesterday. I'm not sure when I will be able to get back down there again. Evan is able to return to "kiddy school" any time now as his immune system has bounced back really well. Still not bullet proof, but a cold wouldn't kill him now. The neighbor with 4 kids next door to Evan is going to watch him after "kiddy school" till the parents can get home. The real burden is that they have to take that 5 hour trip one or two days a week to the hospital. That keeps them both from being at work, so the finances are really rough on them. As family, we are helping out as best we can.

The best news was Evan on Friday got to go outside and play with the neighbor's kids. He was running and kicking a ball while they cheered him on. Pretty much that was the first time he could be out of isolation due to his lack of an immune system. Evan also has a "crush" on the 7 year old girl next door. He draws pictures and has his mom put the girls name on it, then he asks his mom to deliver it since he is kinda shy about his affection for the "older lady". It was so wonderful to see him smiling and laughing as he played with the kids. Behind him was the biggest brightest rainbow that I have ever seen in my 62 years. I think everyone's best wishes and prayers are being answered big time.

Thanks from the heart, JimBob

[FNGw/08SERK]

What a great read this morning JB. Sounds like Evan was able to take in some of the best medicine of all ... Just being a kid!!! Good stuff ... God Bless!

Howie

[eagle.b]

Hey JB,

  Wow, what a tough kid !! I have a 5 and 2 year old and I couldn't even imagine what your family is going through.

Is there a trust fund set up? If not can you set one up on this site, I'm sure all our friends would love to open their hearts and wallets and help this trooper out. I'm sure every dollar will help even if it means just buying him a new kick a$$ toy.

Please advise,

Brian

[GtreetSlide]

Hey JB,

  Wow, what a tough kid !! I have a 5 and 2 year old and I couldn't even imagine what your family is going through.

Is there a trust fund set up? If not can you set one up on this site, I'm sure all our friends would love to open their hearts and wallets and help this trooper out. I'm sure every dollar will help even if it means just buying him a new kick a$$ toy.

Please advise,

Brian

Brian, no there isn't, I wouldn't even have a clue how to start one. I just went to the bank and got a certified check to send to them. They are poor but proud and haven't mastered the art of receiving yet. They are just too busy giving and trying to work their way through all this.

Thanks, JimBob

[GtreetSlide]

Good news, Bad news;

Right when you think you can see a little light at the end of a tunnel, you pass it by only to realize it was just a spot light in a long dark tunnel ahead.

Evan’s port implant went well Monday, but the growth that originally caused his breathing issues (which should have been gone by now) still has some remaining mass. My first question is; “Why don’t they just take it out?” Unfortunately, because of its location and his condition, they feel that the risks of such a surgery would be too great.

So, now, right when we thought Evan could return to “kiddy school”, he is going to be in the hospital for 4-5 days every week, for at least 3-6 months. They will do alternate doses of a heavy chemo every other week, and radiation every other week. Because the chemo they are using is so dangerous, they want him there in the hospital, so they can monitor him 24 hours a day throughout each treatment.

The part that really hurts is that neither of his parents can work now. They are dirt poor and their savings are exhausted already. I just sent them $1000 to hold them over for a little while. I will try to set up a trust for them, but I guess it will require an attorney from Oklahoma to do the paperwork. I just came back to SD because my home was in need of some work. I just returned to find a bacteria growing in my water well. Both my septic tanks need pumping and inspection due to new county ordinance as well. I’ll get everything done here as soon as possible, so I can return to Oklahoma to help the kids and try to set up a trust of some kind. Any feedback on how to acomplish this would be appreciated.

I hope everyone is still praying. Jim

[GtreetSlide]

Thanks everyone, I just talked to them last night again. They had just come home for a few days and then back on next Tuesday. Mom said that Evan was in "time out" for getting a little "cocky". Seems all this trama has led to a little less in the way of "corrections" for his behavior. Being a smart 4 year old, he figured out he can get away with a lot more than he usually does. Anyway, he was taking his shoe strings out of all his shoes and was told twice to stop. Soon enough he continued with his "project". That got him a "time-out".

He doesn't want to talk to anyone on the phone since this all started, so I had to mess with him some to get him on the phone. I told his Mom to tell him that grandpaJim said; "Pllllleeeewww" (a noise mande while sticking your tongue out at someone). Well, she told him and I heard him say; "Tell Grandpa Jim not to do that".  So, once again I told his mom to tell him "Plllleeeewwwww". She did and he ran to the phone to tell me not to do that. I explained to Evan that I learned it from him and had found that I really enjoyed doing it now"... then I went on to ask him if he was trying to see how much he could get away with by removing his shoe strings and ending up in time-out. He told me that; "No, I was just trying to put up a sign for people to stay out of my room." I had to laugh my butt off. All the time spent in a hospital bed with people constantly coming and going would make me want to privitize my room at home as well...I won't get too worried unless he looses his "Spunk"..

Things still going good with his treatment, someone is looking over him...

jimbob

[GtreetSlide]

Sorry folks, long time no update. Evan was doing pretty well, and I had to return home to deal with the rest of my life which kinda fell apart while I was gone. Hoping I can catch up enough so I can get back down there and help the kids, but gotta get some crap cleared up here first.

Evan has been going in at least 4 days a week lately. One stay for chemo, the next week for radiation. He is tolerating the radiation pretty well, with only short spells of throwing up and then it passes. His Dad has been driving Evan and his Mom to the hospital every Monday, then returning home to try to get some work done (and get some income). Evan's Mom is not working at all now and stays with Evan at the hospital. His Dad drives up to get them again on thursdays and then makes the 2 1/2 hour trip back home with them.

As if that schedule isn't enough, Evan has developed a fever at home (he is neutropinic again). So the three days Evan usually has at home have been interupted two weeks in a row now because of fever. This weekend they stuck an IV on him with antibiotics at the local hospital and then transported him by ambulance from Altus to Oklahoma City again.

It really sucks that I'm not there to help them right now. I was a lot less stressed when I was there with them. Now I'm phrickin worried sick. And I'm stuck here in SD with a septic tank leak that has to be repaired because of the county's concern over the watershed. Someone please explain to me why a tank in the ground that dumps crap needs to be fixed because it leaks a little crap (in the same place)

If I get through all this without cracking some county idiot over the head, it will be a miracle.

Even is hanging in there better than the rest of us. I am mostly worried about his Mom now. This is really brutal on her.

Thanks for the thoughts and prayers, jb

[JR]

God Bless Evan and this journey he is on. I prayed for him and your family today. Breaks my heart to see anyone have to deal with this let alone a baby! May God continue to give you all strength and may he heal little Evans body! God Bless!

[smkymtnboy]

prayers for the child from here.

[Chains]

evan must be a strong little boy and his family must be strong as well.  Evan is in our prayers, asa are you.