History

Monday, July 7, 2003

Triston had a follow-up appt. with GI to check on his feeding tube. Outside of some irratation which appears to be a yeast infection, his tube and stomach look good. He is continuing to gain weight.

Friday, June 20, 2003

Triston's vitals and labs were all good so Triston was dischared today. Triston's grandparents came over and we had a cookout and went to the park. His pain medicine seems to be working, he enjoyed himself.

Thursday, June 19, 2003

Triston was admitted to the hospital today to have his feeding tube put in. He did very well. He will stay the night in ICU and if all goes well, he will be discharged tomorrow. Triston seems like he is in very little pain. He's a little "ouchy" but in good spirits.

Wednesday, April 29, 2003

Triston had a GI appt. today. It was determined at his apponitment that he needs to have feeding tube put in. Even with pushing him to eat all the time, no matter how many calories his body gets, it uses more. He's so active, and his body misuses what it does retain. They will put a peg tube sometime over the summer. We opted for that over an NG tube. Triston is way too busy for an NG tube, and we were told that it comes out much easier than a peg tube, which is in his stomach. His peg tube can be hidden much easier, I think it would be more comfortable also.

Wednesday, April 29, 2003

Friday, April 24, 2003

Triston had his Hem/Onc and CT scan appts. today. His exam was good. His vitals are all good. He weighed 18 lbs. Still continuing to grow slowly but surely. His HVA is 28 & VMA is 11, slightly higher than last time. His CT scan came back showing a moderate amount of enlarged lymph nodes. They will try to determine if they are growing or only enlarged because of infection etc... They will continue to compare these last scans with the scans in July and determine something then. Until then it will be a long three months.

Friday, April 24, 2003

Sunday, March 14, 2003

Triston was released from the hospital today. Finally, someone seen how much he really eats. He eats over 1400 calories a day. His appetite is great. He's always eating, but just about the time he starts to gain weight he gets sick with something and looses more than he initially gained. It's like a cycle. I'm not sure if they thought we weren't feeding him or what, but now they have evidence of their own. Sometimes, I'd like to say "I told you so". I just have to keep reminding myself that they are trying to do what they think is best.

Wednesday, March 10, 2003

Triston had an appt. with Endocrinology today. We went directly from that appointment to being admitted back on J5. They are admitting him for approx. one week to keep track of his intake/output. I have been keeping track of eveything he has ate for a month now. The doctors don't think that he can eat that much and still not grow. We'll, they're about to be surprised. They are going to run some more tests including a Fanconi Anemia test.

Thursday, January 30, 2003

Triston had an appt. today in the Hem/Onc clinic. He weighed 17 lbs. 7 oz. and was 28 inches. His vitals are good. And his lab work all came back normal. His HVA is 18 & VMA is 5. After clinic we went to have his CT scan done. It went well also. I thought it might be too much to do everything in one day but it wasn't. His CT results were great. There is now no spots of any size, no "residual, recurrent or metastatic disease". Finally, we're making progress. We got moved to three month clinic and scan appointments.

Monday, January 27, 2003

Triston had an appt. today with Endocrinology. This was at the recommendation of Triston's GI doctor. They are doing some lab work to make sure there isn't an underlying reason for Triston's poor growth. This could be a real possibilty considering the adrenal gland and the hormone issues. Except, once again all his labe are normal. I don't want to sound ungrateful for that, I just wish there was an explanation for his growth problems. According to his Oncologist, the tumor isn't playing a part in this anymore, so we have to find out anther reason why he will not grow. Everyone just assumed the tumor was the problem with his weight. It was thought once it was removed he would catch up. Then they thought his system was just in shock, he would eventually start to grow. Now five months later GI and Endocrine are involved. Maybe we'll find an answer now.

Tuesday, December 31, 2002

Today we opened presents with all of our kids. I don't thimk it mattered to them it wasn't Christmas Day, it was still their Christmas and they were as excited as ever. Maybe even more because they were getting their toys spread out over a week instead of all of them at one time. Today was a good day. Much more relaxed than the usual busy, running form here to there day.

Saturday, December 28, 2002

Triston was discharged today. We went home and celebrated Christmas with my in-laws. Triston had so much fun opening presents, you'd never have realized how sick he was just a few days prior. It's nice to see him being his old self again.

Friday, December 27, 2002

Triston's counts are all normal again. He is still eating excellent. All vitals are normal and we are waiting for tomorrow so we can be discharged.

Thursday, December 26, 2002

Triston is feeling better. He plays with his gifts. He has been eating fine and his vitals are all looking good. His labs came back and some of his counts are still low so we will have to stay here until they reach normal levels.

Tuesday, December 24, 2002

Triston's doctor called early this morning and let us know that we needed to go to Children's immediatly. He said "Don't get dressed, don't eat, just get the baby up and go".
O.K. he's got our attention. I got up and took Triston to the emergency room where his dad and doctors were waiting on us. They were going to do surgery to remove Triston's broviac. He has a staph infection in it that is pretty bad. His blood counts are very low so they couldn't even do surgery on him right away. He had a blood transfusion and then we waited. His surgeon, the one who removed his tumor, said with as low as his counts were, he couldn't even sedate him. Both of our families continued on with their plans to celebrate Christmas on Christmas Eve. They did visit him early this morning when we first arrived. Triston slept a lot that night and his dad and I watched It's a Wonderful Life on T.V. We were very peaceful today.

Christmas Day he had surgery to remove the broviac. It went well. He did feel much like doing anything. Santa visited him several times yesterday and today. Different families brought him in gifts and there wes a holiday meal catered in to the family lounge here on J5. Triston received a bear and a blanket, some cars, a Chicken Elmo, and several other toys. We appreciated the gifts. Christmas was nice. I'm just sorry we weren't at home with are other kids. Although family members did bring them to see us in the evening. I hope they understood why we couldn't all be together. We let them know we would do our family Christmas when we got out.

Monday, December 23, 2002

Triston has not been feeling well. He has no appetite. He keeps getting a fever and they're to the point now medicine won't bring them down. I took him to see his pediatrician and he has and ear infection. Lucky us. They did some blood work just to be safe, to make sure nothing is wrong with his broviac. By the end of the evening Triston is lethargic. His dad and I have to hold his little held up to get him to drink. This isn't your typical ear infection if you ask us.

Wednesday, December 11, 2002

Today was our Hem/Onc clinic visit. His exam went well. He has gained 8oz. His labs are good. His HVA is 27 & VMA is 10. Both of them are back down to where they were in October. These numbers just keep us on a roller coaster ride. Triston's Oncologist is waiting for them to go down to zero now that there is no known tumor in his body but for some reason, they don't get that low.

Monday, December 9, 2002

Triston had an appt. today with someone from GI. They are looking into why he isn't gaining weight as fast as they think he should. Although he isn't losing weight now that the tumor is gone, he didn't take the growth spurt like they thought he would. He had a few tests done to check for blood in his stool & he had other lab work done.

Wednesday, November 13, 2002

Triston had an appt. in the clinic today. His exam went O.K. His vitals are all good. His labs came back, HVA is 39 & VMA is 13. Now. both are up from the previous appt. Doctors do not know if this means the "spot" indeed grew or Triston's HVA/VMA are always going to vary. His platelets are up to 478 not too bad and his ANC is 6045. None of these numbers are going together with the others. Confusing labs for us. He weighed 15lbs. 12oz. so he has gained 3oz. in about three weeks.

Tuesday, November 12, 2002

Triston had another CT scan today to compare the "spot" they had seen last time with todays results. Todays results are confusing. The radiologist said "spot is noted to be better than before, it now measures 8mm". Well, the "spot" last time was only 5mm. I'm not sure what was meant by that statement. Our Oncologist said the CT scan scans in sections and may have missed part of the "spot" last time. So technically it could have been larger last scan but part went unseen. Either way they both think it looks different and better than last time.

Thursday, October 24, 2002

Triston was in the Hem/Onc clinic today. All his vitals are good. He is starting to gain a little weight. He weighed 15lbs. 9oz. That is up from 14.6 lbs at his September 30th visit. All labs are O.K. His HVA was 27 & VMA was 9. Both of those are down from previous results. His ANC is 2071, slightly down from last visit but still O.K. His exam went well.

Monday, September 30, 2002

Triston went to the Hem/Onc clinic for his exam and labs today. His results were all pretty normal. His HVA was 34 & VMA was 12. A huge difference from before diagnosis (HVA 447.5 & VMA 200). I just can't get over the smell in the clinic and on the Hem/Onc floor. It's so sterile and the is so purified that the smell makes me sick to my stomach. I always have to take a few deep breaths before going in. I know I better get used to it.

Wednesday, September 25, 2002

Triston had a CT scan of his abdomen done today. He did not have to be sedated. He's still little enough the sounds of the machine put him to sleep. Ther results of the scan are good. The mass they originally seen has been removed and appears to be completely gone. His right kidney is clear. Where the tumor was on the midline, there is residual soft tissue measuring 5mm. The radiologist thinks this is "left over" tumor versus postoperative swelling. All in all a good scan. I would like for them to see nothing next time. I don't like the it could be this but it may be that. I know nothing is certain.

Tuesday, September 10, 2002

Triston went to have a surgery follow-up exam done today. It went well. The surgeon said "he is getting along quite well", and that his incision has healed nicely. He can return to his normal activities, (as if I was able to hold him back from those to begin with). He also said "he is pleased with his progress". And that if he continued to do well during the next three to six months, he would remove his Broviac. We're already looking foward to that. Wow, that thing is a pain in the neck to care for.

Wednesday, August 28, 2002

We were discharged today. Triston took his collection of mylar balloons around and passed them out to some of the other patients. We met a couple new parents through that. It's sad you're in such close quarters with so many other families in similar situations, and most of them you never meet. I was so consumed by Triston, that I never got the chance to hear their stories or them hear mine.

Tuesday, August 27, 2002

Triston is having another good day. His is very active. His vitals are all good. His blood pressure has went down, so they stopped his meds.
We had a conference with Triston's doctors today. They have decided to leave all the information as it was. They still do not have an answer for the cells that were unknown. Either way they have decided to leave him at a stage 2B, with no chemo. It's almost a scary thought with no many variables in it, and leaving the final decision to a specialist who has never seen him. Part of me wants the chemo. I want to be sure it's all gone, but I know they are the doctors and this is the best plan for Triston. I
We are supposed to be released tomorrow. A support group called Kids N Kamp, came by today and gave us a "basket of hope" today. It had things like lotions, parking passes etc...

Monday, August 26, 2002

Triston played hard again today. It's so nice to see him getting back to his old self. He took a bath today and got put into regular clothes. Maybe we're forecasting that we're ready to go home!
His vitals are the same. His blood pressure is still a little elevated. He is eating very well.
He has learned how to tell the doctor's and nurses "no" when he doesn't want them to do something. Tonight, grandma is staying with him so that we can go home and get two of our other children off to the first day of school.

Sunday August 25, 2002

No real new for today. Triston's vitals are good except for his blood pressure. It is up a little. They started him on meds for it, so hopefully they do the trick in bringing it back to normal. His diet is regular.
He had lots of visitors today. And he played his heart out showing off for everyone. Maybe he'll sleep better tonight than last night!
He has started to pull himself up by holding on to the crib rails. It won't be long before he can get out.

Saturday August 24, 2002

Today was the first time we left Triston since he had been admitted to the hospital. His dad and I went home to get more clothes and to check on things. A volunteer had come up to stay with him. She had rocked him and given him fruit loops and juice. She had also taken him to the playroom. He got a new toy from the cart today.
After we returned we took him for another walk. This time it was for a half hour. Triston learned how to sit up from a laying position today. He also cut tooth #8.
He was quite a handful today. He didn't nap at all. He is on a regular diet and all his vitals are good.

Friday, August 23, 2002

The Octreotide tests came back negative. Triston does not have to complete the third one today. Most of the tumor results are back. The tumor has not spread to anywhere other than attached (6) lymph nodes in the adrenal gland, the tumor was rather small for a Neuroblastoma (7x6x4.5 cm) about the size of a lemon, N-MYC was non-amplified, MKI chrom. was increased, and the tumor had unknown cells with nuclei in them which they cannot determine to be good or bad. All in all these are good results.
A specialist from out-of-state is consutled. The tumor biology and histology are being rated low to intermediate. A stage of 2B or 3 is being debated. Triston's tumor was resting on his midline, but didn't cross. Also, his age is exactly one year, almost to the day. Over age one would mean less of a survival rate. But a stage 2B would mean less treatment and better odds of survival. This is why the doctors wanted more opinions from out-of-state specialists. There were so many variables and "what if's" today.
Triston's doctor decided to rate him a stage 3. We talked about chemotherapy and other options. We are pretty disappointed. While we were in the cafe eating dinner, the out-of-state consult called back and said to down grade Triston from the stage 3 to the stage 2B. Great news! This is what allowed us to choose the clinical trial he is on. This means surgical resection with follow-up care only.
Triston had a good day overall. All his vitals are good.

Thursday, August 22, 2002

Triston had tissue scan # 2 done today. This scan went much better than the scan yesterday. He only had to be lightly sedated today, so he had about half the side effects from the medicines.
Doctors are leading us to believe the tumor is not aggressive, but we have to wait on all of the tumor studies to come back. The bone scan and the MRI both came back negative today! The MRI showed no signs of any residual tumor.
A few of the doctors came around and played the piano and sang songs to all the children. "M.I.C.K.E.Y", and Yankee Doodle Dandy were among the songs.
Triston is back on a regulad diet. All his vitals are good. We were supposed to talk about a diagnosis, treatment options, and discharge today but all of the results did not come back like expected so we'll have to wait a little longer.

Wednesday, August 21, 2002

Triston had his bone scan and MRI done today. He is very sleepy from all the medicine they had to give him. The fisrt of three tissue scans were also done today. He is having Octreotide tests done instead of MIBG tests. The doctors said they are almost the same but Triston could have these performed a week earlier than the MIBG tests.
He is put back on an all liduid diet again due to a reaction (sweating alot, blood pressure up, staring etc...)from all the medicines. Maybe three tests today was just too much.
If today's tissue scan has good results he may not need to repeat the scan Friday.
Ronald McDonald visited him today! We also learned how to change his broviac dressings for a possible release on Friday. We took him on his first trip from his room, destination- the lobby.

Tuesday, August 20,2002

Today was another good day. He is on a clear liquid diet, I'm not sure why becuase they brought him pudding and mashed potaotoes. Either way he was a "little piggy".
He is making so much progress. Today, his dad and I went down to the cafeteria and when we came back, he was sitting up in bed. After talking to the nurses, we foung out he had been walking around the crib too! Maybe we should leave more often. HA-HA!
The doctors' have scheduled a bone scan for tomorrow at 9:00 a.m., and another MRI to follow that. His bone marrow boipsy came back negative today! Our first piece of great news. The tumor biopsy isn't back yet. It won't be back until Friday.
Vitals are all still good. You can say "mom-mom" now and you wave bye-bye to people who are leaving.

Tuesday, August 20,2002

Today was another good day. He is on a clear liquid diet, I'm not sure why becuase they brought him pudding and mashed potatoes. Either way he was a "little piggy".
He is making so much progress. Today, his dad and I went down to the cafeteria and when we came back, he was sitting up in bed. After talking to the nurses, we foung out he had been walking around the crib too! Maybe we should leave more often. HA-HA!
The doctors' have scheduled a bone scan for tomorrow at 9:00 a.m., and another MRI to follow that. His bone marrow boipsy came back negative today! Our first piece of great news. The tumor biopsy isn't back yet. It won't be back until Friday.
Vitals are all still good. He can say "mom-mom" now and waves bye-bye to people who are leaving.

Monday, August 19, 2002

Triston got moved from the PICU back to J5 today. That means improvement. Everything has been taken off him, the restraints, the NG tube etc... He had a great day! He spent alot of it picking at the left over tape and band-aides. He was able to roll over today, and he has bowel sounds now which means he can eat. He had one orange popsicle. I got to hold him alot today. So did his daddy and grandparents.
He also had a renal scan done today. He must have felt relaxed because he slept through it.
Today was a fairly uneventful day. We are just waiting to see if the results from the tumor come back tomorrow. We're praying for good news!

Sunday, August 18, 2002

Today the pastor came in and Triston got baptized. Although he is feeling alot better that yesterday, he is still very "ouchy" at times. Vitals are all O.K., but they would like for his pulse and resp. to go down. They have been giving him Atavan for anxiety, to see if that will help. They still have restraints on him to keep him from pulling his NG tube out. His oxygen was removed this evening, and he got a sponge bath. Still no bowel sounds.
I got to hold him for about an hour today.
Doctors' think his tumor results will back by Tuesday.

Saturday, August 17, 2002

The surgeons came by to see Triston today. They think he is doing very well. They are very hopeful that the worst is over. At 2:30 p.m. the ventilator is taken out, and Triston is put on oxygen. He has done so well. I got to hold you for the first time since your surgery for only a few minutes. He was in alot of pain today and had to be restrained at times because he pulls at his tubes.
Triston's pediatrician stopped by to see him. Although Triston slept through him being there, we appreciated the visit! Finally a familiar face. You asked for "mama" today.

Friday, August 16, 2002

Today was very hectic. The doctor's are trying to schedule numerous tests, surgeries etc... While you slept well last night, as always, we slept very little. The doctor's told us today that the tumor appears to be "larger than your kidney". They also said they would wait until the biopsy came back, but given the size of the tumor and how it was wrapped up in some major arteries, that most likely it would not be completely removed be surgery alone. The doctor's said that he would have a 50-60% chance of survival.
Today an MRI, Echo, EKG and CT scan are done. The CT scan looks hopeful. The tumor is smaller that what was originally thought, so the called a surgeon to see if they could fit you in. The surgeon said, "we are going to try to remove the tumor vs. doing a biopsy alone". What wonderful news! Triston left for surgery at 6:30 p.m. after falling asleep in my arms.
During surgery a bone marrow biopsy is done. Also a broviac is put in. The tumor was completly removed and so were six lymph nodes connected to it. He was given a blood tranfusion and put on a ventilator because of the length of the surgery. At approx. 12:00 a.m. Triston was sent to the PICU from surgery. All had went well. He has an NG tube in and is in a very deep sleep from all the medicines being given to him. His vitals are all good except for a low grade fever.
The surgeon thinks you are like a little train, "you just keep chugging along".

Thursday, August 15, 2002

Today Triston had an ultrasound done at Children's Hospital. Triston had been to his pediatrician a few days prior and he thought he could feel his liver sticking out beneath his ribs. He had been losing weight for a few months and we thought we were going to find out the answer and afterwards go the Ohio State Fair. We didn't make it to the fair that year.
During Triston's ultrasound the tech looked for quite awhile before she called the doctor in who only looked for a few minutes. He told us that they could see a "mass" pushing on his liver. He also told us "the mass appears to be rather large with alot of blood flow to it". He asked us to wait back in the waiting room. A few minutes later he came to get us and said there was somone on the phone for us, Triston's pediatrician. His pediatrician explained it was most likely a Neuroblastoma. That they would do a biopsy to find out the extent of it and Triston would have to have chemotherapy. He also said "he has seen things like this cured". Our first sign of HOPE.
Triston was admitted to J5, the Hem/Onc floor at Columbus Children's Hospital. Although J5 is a wonderful floor with great doctors and nurses, we certainly were not prepaired to call it home for the next three weeks.
The first series of tests began. We must have heard ten times over the next few days that they were doing these tests to "rule out" Neuroblastoma. We learned quickly that instead of ruling it out they were confirming it.

Friday, April 15, 2005 12:54 AM CDT

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