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this is a journey of travis's life since he was diagnosed with a brain tumor on october 8, 2003.
they gave the tumor the name of
" hypothalamic optic pathway glioma" and he was to be started on chemo in hopes for killing it to shrink it and go away or to at least keep it from growing.
travis was diagnosed back home in princeton, il. i was taking travis back and forth to the doc, with failure to thrive. in the middle of aug. 2003 he started to look scrawny to me. being the mother of five children i just didn't think it to be normal that he didn't want to drink his bottles. After trials of test's and not getting anywhere and travis had lost almost a lb. again the doc's finally agreed to do a cat-scan. that is when they found the tumor. we were sent to peoria, il. st.jude affilite. there they did an m.r.i. and they told us the name and the size(golfball size) and that it was inoperable. so we were sent home to wait 4 wks. to go back and do another m.r.i. and to see what the tumor was or wasn't doing.
on nov. 3rd, 2003, the 2nd mri came back and we were told by the doc's that they believed the tumor to be growing and they were going to send us to memphis, tn. to st. jude childrens research hospital.
we arrived at st. jude childrens hosp. on nov. 8, 2003. we had to stay at the marriott for 2 wks and then we went to the ronald mcdonald house and we were put in rm. #15.
travis went on to have a sub-q-port put into his chest on the right side, it is a line into a vein so that he does not have to be poked repeatedly looking for a vein. the catheter is in a vein and is accessable at all times. the only problem with that was that it failed for travis. he had a bad experience. the catheter had punctured the vein and went into the lineing around his right lung. unfortuanately it was not found out until travis had undergone his second surgery for a feeding tube. after his feeding tube surgery he became very distressed due to the fact of what the catheter had done. all of the fluids, morphine, heparin and saline all went into the port, except for the fluids filled up his pluralcavity( lining around his right lung, instead of going into his vein. so needless to say they had withdrawn over 420 cc.s of fluid from his pulsac lining on his right lung. (by syringe) greatful it did not have to be done any other way.
so with this happening, travis had to have another surgery to take out the first port and put another one in on the left side. this was very successful. and we have been using it for all his procedures with not a worry in sight. (thank u God)
we started chemo on nov. 27, 2003 on thanksgiving.
chemo consisting of carboplatin and vincristine. for an 18 month protocol.
the first 10 wks we were to stay here at the ronald mcdonald house and the vincristine was (and is) just a fast push into his line. the carboplatin takes 6 hrs. for everytime he has it. 1 hr. of flush saline then the 1 hr. dose of carboplatin, and then he has to have 4 hrs. of saline flush after.
the protocol of them went like this: the first time was to be carbo/vincristine then vincristine, vinc, vincristine for the following three weeks. then carbo/vincristine again and v/v/v/. then carbo/vincristine, vincristine. then off for 2wks. then on for 2wks. for the next 18 months with mri's every 2 mnths. well travis made it to almosst the first ten weeks with no trouble's. Almost!!!
On the second course of vin/carbo Travis had a reaction to the carbo they believe. (they being the docs)
so, they stopped the carbo and we waited. we did i believe 2 more rounds of vincristine here at memphis snd we were to go back home and we did one sesion of vincristine back at the affiliate and we were to drive back down to memphis for the 3rd round of carbo/vinc. since he had a reaction to it the 2nd time.
We came back on jan. 22,2004 to do just that.
Except when i took Travis into clinic that day,out nurse took one look at Travis and said what was wrong. Not seeing Travis for almost 2 weeks she noticed all the changes i was telling her in his face and personality actions that there was something not right. Especially after i had told her of how Travis had been acting.
Doc. Fouladi came in saw Travis and ordered a cat-scan stat.
Well we came to find out that the tumor was bleeding.. That day i was told that we had to do surgery emediately on Travis. I was told that he was in a very critical state so i called home very fast. Travis was set to have his surgery on Jan.27th,2004. I was told that we had no other way because the tumor had started to bleed and it could hemoragh.
Travis had all his family here with him and he was holding on strong thru the weekend.
Mon. morning he took a change for the worse. I just got the news for when we were to be at LaBohner for addmissions.
Travis was laying with his daddy when all of a sudden he got very warm, hot headed and it started.
The tumor had hemoraghed.Travis had to go for surgery.
(now i cant tell how it all went because it is not easy for me to back over it again.)
The surgery went on jan.26th. The surgery went well. Travis did have to have 2 units of blood given. Thats more than the lil'man holds. He was very strong tho. He knew that mommy and daddy were both right there by his side.
Travis is a lil'miracle!!!!!Thats for sure. He was very swollen of course but looking for his paci the whole time I swear.
We had to stay a LeBohner for 2 days i believe. and we went back to icu at St.Jude.
Well Travis made it out of icu and we were free to go back to the Ronald Mc.house.
I finally looked at Travis' website, and in doing so I realized that when I updated his Journey after his surgery I did not give all info. I do believe that anyone will understand with me not wanting to react it all.
The day that Travis had gone in for surgery, when he hemoraghed Travis had a Massive Stroke. This has left him comprimised on the left side. Travis does not use his left hand or foot. This has kept Travis from crawling or walking YET.
Travis recieves physical therapy and he is getting stronger everyday. Travis wouldn't stand on his feet(w/support)after all of this happened to him. But today he would love to try and stand. So we pray that he will regain use of all the left side.
Also the day of the surgery Travis had a Grandmal Seizure. In event of this we give Travis meds to try and prevent that ever happening again.
Another thing that did change is a week after we got out of ICU, Travis had to go back in the hospital. Only because he had come down with a cold.
During this time the doc's also found that Travis' Sodium level's were droping. Finding that this was caused by the Vincristine. They took Travis off that chemo.
In doing that Travis only recieves Chemo once a month.
We usually take him back to Memphis for that. We did do chemo of Carboplatin recently in June at the affiliate. But no longer. (I have my reason's!)
Travis is doing very good as of Today June 12,2004. Follow in his Daily Journal's.
I HAVE TO TELL THIS...I APOLOGIZE TO ALL THAT HAVE COME TO VISIT TRAVIS' SITE THAT I HAD NOT PUT THE INFO OF THE DOC'S CHANGING THE NAME OF TRAVIS' BRAIN TUMOR.
AFTER ALL THAT HE WENT THRU WITH THE BLEED AND THE SURGERY. THE DOC'S WENT AHEAD AND DID A BIOPSY ON THE PART OF TUMOR THEY WERE ABLE TO TAKE OUT.
THE DOC'S TOLD ME THE NAME OF THE TUMOR WAS A J.P.A., A JUVNILE PILOCYTIC ASTROCYTOMA(PLEASE FORGIVE ME IF I DIDN'T SPELL IT CORRECTLY).
I APOLOGIZE FOR THE REASON OF, WE HAVE JUST MET ANOTHER MOTHER THAT WAS LOOKING FOR ANY ONE TO HAVE THE SAME TYPE OF TUMOR THAT HER SON HAD.
BECAUSE I DIDN'T TELL OF THE CHANGE SHE DIDN'T REALIZE THAT HER SON AND TRAVIS DO HAVE THE SAME TYPE OF RARE TUMOR. I HOPE THERE ARE NO OTHER'S, IF THERE ARE UNFORTUNATELY I WOULD LOVE TO HEAR FROM ANY PARENT TO LEARN FROM THERE CHILD AND MAYBE HELP EACH OTHER IN THIS TERRIBLE WAY OF LIFE WITH A BRAIN TUMOR.
I once again have to say that the Doc's, have told me in the past 2-3mnths., that the tumor cells are looking more like a Pilomyxoid instead of Pilocytic. To my thoughts that is the tumor is more aggressive than before. There is a difference in the cells.
Travis has now (by Nov.2006)
Undergone more chemos. He in all has tried the Carbo,Vincristine,you can read that, the Carbo ended with the surgery in June2005. Sept.2005 Travis had to start Temodar. Until May 2006. He started VinBlastine in June 2006, then he only stayed on that until Sept.2006.
Now Travis has started Radiation on Oct.30,2006. Travis finished his radiation treatment and the tumor had been stable for 15mnth's. On March27,2008 the MRI showed that there is growth. The Doctor's only believe it to be a very small growth, MM in size. So they sent us home for 8wks. to go back on June3rd, for scan's to see what the tumor is doing.
The doctor's decided to approach me with the decision of waiting to see if there is growth, their 50/50 thought's were that it is best for Travis for the best quality of life just to wait rather than try to start oral CHEMO'S again that the doc's aren't to sure of due to the relapse's that Travis tumor has had.
I am looking into alot and now we are going back early for MRI scan's due to the increase of Travis having back(behind the right ear) headache pain's. The growth is said to be on, near the 7th and 8th nerve, and they were worried of his hearing, but w/ the test he seemed to be ok, but this reoccuring pain is new, never has he complained of pain and push on his back part of the right side of his head.
Now what we find and what Travisman will have to do is not for sure.
I have to say the sign of throwing up is not there, but it was and is the first question given to me. I have to say if that were the case I would of been in Memphis faster than the question.(BEEN THERE,DONE THAT)
Journal
Thursday, September 24, 2009 0:40 AM CDT hi all, real quick go to the new site.....
caringbridge.org/visit/travisman.... i put up some pics and i will try to keep doing that there on the new site.
night, thankyou and godbless.
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