Rigdon - Indie - Noah - Let's do lunch!.
Tuesday, August 28, 2012
Friday, August 24, 2012
Aug. 24
Rigdon has been doing great. He goes in for his third treatment today. He has been talking a lot more and walks everywhere now. The lumps behind his ear are alomost completely gone, which is probably why he talks more and walks now in just two weeks. It has been a wild ride and has been a struggle to deal with. Brooke has been a trooper trying to deal with everything and keep up the schedule with the other kids and going on with life. Still the emotional toll it takes does need to be delt with so it's been tough for her to know how to let it all out and still deal with the rest of life. You have done great job Brooke, love you more than I know how to express, keep up the great work, you are an amazing woman!
Rigdon has been doing great. He goes in for his third treatment today. He has been talking a lot more and walks everywhere now. The lumps behind his ear are alomost completely gone, which is probably why he talks more and walks now in just two weeks. It has been a wild ride and has been a struggle to deal with. Brooke has been a trooper trying to deal with everything and keep up the schedule with the other kids and going on with life. Still the emotional toll it takes does need to be delt with so it's been tough for her to know how to let it all out and still deal with the rest of life. You have done great job Brooke, love you more than I know how to express, keep up the great work, you are an amazing woman!
Sunday, August 12, 2012
Big Rig's Oil Change
Aug. 10
2:30 Rigdon recieved his first treatment. It took a little while for him to get calmed down after coming out of the anesthesia for the port placement. He slept for a while in Brooke's arms while we waited for the Doctor's and Nurses to get to us, there is so many other kids in the Oncology unit recieving thier treatments. Primary Children's is an amazing place that really knows how to take care of the children. If ever you have an opportunity to donate to Primary Childrens I know I will be experiencing first hand the extra care and attention they give to the chilfren there. Finally got home at about 5:00 ate dinner and headed up to Morgan. Brooke's mom watched the kids again. Rigdon was so happy to see his brother and sister's, crawling all over the place and playing with them, he had not seen them all week.
Aug. 11
Aug. 12
Rigdon woke up this morning very happy again until medicine time anyway, he did take it better though. things are looking very good today, his skin is clearing up and lump is looking smaller. Rest of the day will be filled with Church and spending time with the family.
2:30 Rigdon recieved his first treatment. It took a little while for him to get calmed down after coming out of the anesthesia for the port placement. He slept for a while in Brooke's arms while we waited for the Doctor's and Nurses to get to us, there is so many other kids in the Oncology unit recieving thier treatments. Primary Children's is an amazing place that really knows how to take care of the children. If ever you have an opportunity to donate to Primary Childrens I know I will be experiencing first hand the extra care and attention they give to the chilfren there. Finally got home at about 5:00 ate dinner and headed up to Morgan. Brooke's mom watched the kids again. Rigdon was so happy to see his brother and sister's, crawling all over the place and playing with them, he had not seen them all week.
Aug. 11
Brooke and I went on a club bike ride up in the east canyon damn area. It was very nice to have a stress outlet, thanks to SimplyMacRacing. Shauna said that Rigdon woke up very happy, probably because he did not have to go directly into the car seat and to the hopital. He was also very happy to eat because usually he could not eat until after the tests. Although he does hate having to take all his medicine especially the Prednisone. It is some nasty stuff, it smells like the liquid glue you put on a cut or the liquid wart remover, I got a tiny bit on my lip while he was trying to spit it out and even after wiping it off I could still taste it on my lip, totally disgusting. But just from the treatment and the steriods his lump behind his ear had already decreased by half by lunch time. He also is a lot more active and jabbering more, probably cause he can hear a little better. After the bike ride we wnt home and the girls went to a neighbors birthday party, Rigdon and Mommy slept, Jaygen and I watched a movie.
Aug. 12
Rigdon woke up this morning very happy again until medicine time anyway, he did take it better though. things are looking very good today, his skin is clearing up and lump is looking smaller. Rest of the day will be filled with Church and spending time with the family.
Friday, August 10, 2012
Big Rig's Hemi installation
Aug. 10
7:00 - Arrived at Hospital and took a number. Waiting room was full of people and kids getting ready to go in for surgury.
8:20 - Finally in and Doctor (Skarda) is telling us what is going to happen for the port placement.
9:30 - Doctor came and updateed us that the port placement went great and they are just starting the bone marrow biopsy. They are going to take two samples, one from each hip in the back.
7:00 - Arrived at Hospital and took a number. Waiting room was full of people and kids getting ready to go in for surgury.
8:20 - Finally in and Doctor (Skarda) is telling us what is going to happen for the port placement.
9:30 - Doctor came and updateed us that the port placement went great and they are just starting the bone marrow biopsy. They are going to take two samples, one from each hip in the back.
Thursday, August 9, 2012
Big Rig in the shop
1st week of June Rigdon visited the Pediatrician for his 1 year checkup. Blood tests revealed low iron count so he was put on Iron supplement and Doctor said the skin irritations were eczema.
June 17 - Brooke and I returned form Ragnar and picked up the kids from Grandma & Grandpa Carlson. Shauna showed us the lump behind his right ear.
June 18 - Appointment with Pediatrician - checked lump and Dr. Allred (pediatrician) said that it was most likely a swollen lymph node and prescribed him antibiotics.
July 27 - lump still has not gone away and gotten a little bigger
July 30 - Appointment with Dr. Ryan (pediatrician) said same thing but if it does not go away after next antibiotic to take him to the Ear Nose and Throat specialist. Prescribed more antibiotics.
Aug. 6 - Lump still present - made appointment with E.N.T. - E.N.T scheduled CT scan for Tuesday.
Aug. 7 - CT scan - I was thinking it was most likely a mastoiditis. Scan revealed large mass behind right ear but that it had deteriated much of the surrounding bone and closed off the canals to the ear drum. We do not know how the rest of it all happened really just that everything started getting scheduled for us and doctors were calling Brooke within hours of scan and telling her what was going on. They told her it was LCH, Langerhan's Cell Histiocytosis. Basically it is a malfunction of the white blood cells and they will conglomerate together disrupting the normal function of the surrounding cells. Almost like an autoimmune disorder. They term it as cancer like but do not label it as a cancer. It is a rare condition that is not hereditary or contagious, so he didn't catch it from something else.
Brooke called and spelled it out for me and as I wrote it down my nursing came back and knew that it was something more serious than mastoiditis. So of course I went to the internet and researched it but only from the good sites one of them being the Huntsman Cancer Institute site. I was directed to Dr. Fluchel who is the leading expert on LCH. Who we had an appointment with on Aug.8 but didn't know it until the appointment.
Aug. 8 - 9:30 - Appointment with Oncologist. Waiting in the exam room the resident (Dr. Eldridge) came in asked all the normal questions and did a physical examination, left for a bit then came back in with Dr. Fluchel which I fianlly recognized and was very releaved to see that he was the doctor heading all this up. Dr. Fluchel also did a phisical examination. He explained to us what is is and what to expect for treatment, which is 6 weeks of chemotherapy once a week, then once every three weeks for 6 months or so.
11:00 - Appointment with E.N.T. - Resident saw us first after Rigdon has had his vitals, weight, height checked for the second time. Resident did physical examination, left and talked to Dr. Park (E.N.T.) both came back in, Dr. Park did another Physical examination, checked his ears and said there is no way that he would pass an audio test because ear canal was totally closed off on right side and about 50% on the left. Which would explain his not talking yet and not responding right away when we say his name. E.N.T. said it would be like sticking your fingers in your ears is probably what he hears.
12:00 - lunch and a break for Rigdon to sleep, he slept for about an hour then back up to the hospital.
2:00 - Appointment with Dermatologist - Dr. Vanderhoort & Cipriano - another physical examination, as soon as she saw his skin (exzema spots) she said that she definately thinks it's liked and that she could get a good sample. Rigdon recieved a shot numbing in the lower abdomen waist area, with cookie cutter type instument, kind of looked like a pen, with a circular blade on the end pressed and cut out a small pea sized peice of flesh for the biopsy. Rigdon then recieved two stitches. He did pretty good but was pretty mad that we were holding him down. So by now he has had 6 exams today and is totally sick of the hospital.
3:00 - Follow up with Dr. Fluchel - talked about what else we needed to do for the next couple of days.
3:30 - Follow up with Dr. Park - talked about what he will be doing and watching for in the next couple of days.
4:00 - drove to Seven Peaks to pick up Brecklyn, Chandlyr and Rigdon. Grandpa & Grandma have had them since camping on Sunday. Thanks so much to them for being able to watch them while we lived in the hospital.
5:30 - Went to a cousin's birthday party for some much needed company and laugh's, thanks so much.
Aug. 9 - 11:00 - Rigdon hasn't been able to eat since last night for the tests and for some reason he won't drink the apple juice. Back to the hospital for full body x-rays, MRI and another CT scan, he is a bear. He is so sick of people handling him he doesn't want any one touching him but Brooke and I, he even didn't want to be held by Grandma.
12:30 - started preping him for the MRI and almost ready but an emergency came in so we had to wait until 2:30 to get into the scan room. Luckily he fell asleep on Brooke's lap for and hour or so and then she had to walk him around in the stroller until it was time to go in.
2:30 - they give him his sedation and he fights it pretty good so they give him a little bit more, that conked him out. He is in the MRI for about 45 minutes. As soon as he got out of that they take him to the CT scan and he wakes up a little so they have to give him a little more sedation. That one only takes about 10 minutes. Off to the recovery room where he is in and out of sleep and tossing while Brooke tries to hold him. I went up stairs to talk to the Oncologist for tomorrow's schedule. Tomorrow at about 7am they will place the port and do the bone marrow biopsy. The bone marrow biopsy is because he is anemic(low iron) and they want to rule out all probabilities of the LCH spreading. Most likely he is anemic because he is like his Dad and drinks a lot of milk which makes it harder for his body to absorb the iron supplements he has been on. Well I am all caught up so I will post most everyday for an update.
June 17 - Brooke and I returned form Ragnar and picked up the kids from Grandma & Grandpa Carlson. Shauna showed us the lump behind his right ear.
June 18 - Appointment with Pediatrician - checked lump and Dr. Allred (pediatrician) said that it was most likely a swollen lymph node and prescribed him antibiotics.
July 27 - lump still has not gone away and gotten a little bigger
July 30 - Appointment with Dr. Ryan (pediatrician) said same thing but if it does not go away after next antibiotic to take him to the Ear Nose and Throat specialist. Prescribed more antibiotics.
Aug. 6 - Lump still present - made appointment with E.N.T. - E.N.T scheduled CT scan for Tuesday.
Aug. 7 - CT scan - I was thinking it was most likely a mastoiditis. Scan revealed large mass behind right ear but that it had deteriated much of the surrounding bone and closed off the canals to the ear drum. We do not know how the rest of it all happened really just that everything started getting scheduled for us and doctors were calling Brooke within hours of scan and telling her what was going on. They told her it was LCH, Langerhan's Cell Histiocytosis. Basically it is a malfunction of the white blood cells and they will conglomerate together disrupting the normal function of the surrounding cells. Almost like an autoimmune disorder. They term it as cancer like but do not label it as a cancer. It is a rare condition that is not hereditary or contagious, so he didn't catch it from something else.
Brooke called and spelled it out for me and as I wrote it down my nursing came back and knew that it was something more serious than mastoiditis. So of course I went to the internet and researched it but only from the good sites one of them being the Huntsman Cancer Institute site. I was directed to Dr. Fluchel who is the leading expert on LCH. Who we had an appointment with on Aug.8 but didn't know it until the appointment.
Aug. 8 - 9:30 - Appointment with Oncologist. Waiting in the exam room the resident (Dr. Eldridge) came in asked all the normal questions and did a physical examination, left for a bit then came back in with Dr. Fluchel which I fianlly recognized and was very releaved to see that he was the doctor heading all this up. Dr. Fluchel also did a phisical examination. He explained to us what is is and what to expect for treatment, which is 6 weeks of chemotherapy once a week, then once every three weeks for 6 months or so.
11:00 - Appointment with E.N.T. - Resident saw us first after Rigdon has had his vitals, weight, height checked for the second time. Resident did physical examination, left and talked to Dr. Park (E.N.T.) both came back in, Dr. Park did another Physical examination, checked his ears and said there is no way that he would pass an audio test because ear canal was totally closed off on right side and about 50% on the left. Which would explain his not talking yet and not responding right away when we say his name. E.N.T. said it would be like sticking your fingers in your ears is probably what he hears.
12:00 - lunch and a break for Rigdon to sleep, he slept for about an hour then back up to the hospital.
2:00 - Appointment with Dermatologist - Dr. Vanderhoort & Cipriano - another physical examination, as soon as she saw his skin (exzema spots) she said that she definately thinks it's liked and that she could get a good sample. Rigdon recieved a shot numbing in the lower abdomen waist area, with cookie cutter type instument, kind of looked like a pen, with a circular blade on the end pressed and cut out a small pea sized peice of flesh for the biopsy. Rigdon then recieved two stitches. He did pretty good but was pretty mad that we were holding him down. So by now he has had 6 exams today and is totally sick of the hospital.
3:00 - Follow up with Dr. Fluchel - talked about what else we needed to do for the next couple of days.
3:30 - Follow up with Dr. Park - talked about what he will be doing and watching for in the next couple of days.
4:00 - drove to Seven Peaks to pick up Brecklyn, Chandlyr and Rigdon. Grandpa & Grandma have had them since camping on Sunday. Thanks so much to them for being able to watch them while we lived in the hospital.
5:30 - Went to a cousin's birthday party for some much needed company and laugh's, thanks so much.
Aug. 9 - 11:00 - Rigdon hasn't been able to eat since last night for the tests and for some reason he won't drink the apple juice. Back to the hospital for full body x-rays, MRI and another CT scan, he is a bear. He is so sick of people handling him he doesn't want any one touching him but Brooke and I, he even didn't want to be held by Grandma.
12:30 - started preping him for the MRI and almost ready but an emergency came in so we had to wait until 2:30 to get into the scan room. Luckily he fell asleep on Brooke's lap for and hour or so and then she had to walk him around in the stroller until it was time to go in.
2:30 - they give him his sedation and he fights it pretty good so they give him a little bit more, that conked him out. He is in the MRI for about 45 minutes. As soon as he got out of that they take him to the CT scan and he wakes up a little so they have to give him a little more sedation. That one only takes about 10 minutes. Off to the recovery room where he is in and out of sleep and tossing while Brooke tries to hold him. I went up stairs to talk to the Oncologist for tomorrow's schedule. Tomorrow at about 7am they will place the port and do the bone marrow biopsy. The bone marrow biopsy is because he is anemic(low iron) and they want to rule out all probabilities of the LCH spreading. Most likely he is anemic because he is like his Dad and drinks a lot of milk which makes it harder for his body to absorb the iron supplements he has been on. Well I am all caught up so I will post most everyday for an update.
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