Journal History
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Monday, February 27, 2006 3:38 PM CST
NEW PHOTOS ADDED AUGUST 2006!!
Dear Friends and family,
Well, it's not officially spring yet, but with 66 degrees hitting today and tomorrow, it's hard not to "think spring".....close enough for me!
It seems that we are in a place where things are stable enough that we don't need to update as often. That's mostly a good thing. We are grateful to be here. Brian is not without problems/complications, but he is far from the days of acute care. We are reminded quite often how lucky we are to be past the very difficult and acutely sick days. There is a new baby here at the Med Center with JMML who is about two weeks past his bone marrow transplant. He is facing one of the times throughout this journey that are so difficult when the chemo kicks in, destroying all the bad cells, but taking along all the good cells at the same time. Little Lane is 10 mos old and embarking on the road to recovery, but it is not an easy ride. That is just one month older than Brian was when he began his transplant. I pray that his road to recovery is smoother than Brian's was. They do not have a webpage set up, but I ask you to send out your good thoughts and prayers for a sweet little baby in Nebraska who is in the fight for his life.
We are also reminded of how far we have come as we walk along side another family going through a cancer battle with their son. Eric's former PE teacher, "Mr. T" and his wife Lisa, are beginning the battle with their young son Joey. Joey and his twin sister Olivia are a few weeks away from their 4th birthday, with their big brother Danny, 6 yrs old, looking out over both of them. Joey has begun treatment for neuroblastoma. Mr. T and his family are not just part of our school family, but also our neighborhood family. I know that the type of cancer and treatment are not identical to Brian's, but we still know what it is like to have a child fighting for his life with a horrid disease. We want to be there to help them along the way, because nobody should go through this alone. We hope that sharing Brian's story of survival gives hope to them and others like them. We are just a tiny part of their support group though. They have a HUGE support system with family, friends and community behind them. There was a very successful fundraiser in Joey's name last month to prove that!! If you would like to visit Joey's webpage to offer prayers or kind words, I know they would love it! Joey is a HUGE dinosaur fan, just like Brian was at that same age. Go to: www.caringbridge.org/visit/joeythompson.
Ok, on to Brian and his update. January had him checking in with the cardiologist and eye doctor. The eye exam showed a significant change in one of his eyes, so we got his glasses changed. The cardiology appt showed good labs and a good exam, however, there has been no improvement in his echocardiogram. The pressures in his lungs are still high. Good news is that they have not gotten worse, but they still haven't gotten better. The normal pressure should be about 25, but his are still 85. They are putting him on a new drug to take in addition to what he is already taking. They hope that the combination of the two will bring about more of a change in the pulmonary pressures. He will follow up again in 6 mos, along with his oncology check up.......that one will mark 7 yrs since his last transplant!! Wow! I remember when they said he might not make it 9 months, and now here we are almost 9 YEARS later! There is always hope!
Brian also saw the endocrinologist. No change there, so we just plug away with his growth hormone shots every day and keep trying to make changes in his eating and diet to help him grow naturally too. There is growth, but it is slow. He is getting closer and closer to actually getting ON the growth curve, instead of UNDER it!! Little by little........one day at a time!
Brian had a quick trip to the dental clinic this month after a battle with a door knob........he was on one side of the door, while Eric was on the other.......guess who won?? The door knob knocked into Brian's mouth, cutting his lip and loosening a tooth! Initially, we thought it was one of the teeth he had already lost, meaning this was a permanent tooth about to come out. After further evaluation at the clinic, they assured us it was a baby tooth, and that it should come out! Phew!! A few days later, it did come out bringing a visit from the tooth fairy. I'm glad it wasn't a permanent tooth. He has enough to deal with without adding that to the mix!
As for the ADD evaluation and trial and error on several meds, the doc came to the conclusion that Brian should be evaluated by a Neuropsychologist. After a long visit and many tests with her, we hope to be getting some good answers on how to best deal with Brian's poor attention to certain things, and how to focus better. We are awaiting her final report in the mail, but in the meantime, she has recommended that he see a Neuroopthamologist. We have an appt with him in March. All of these evaluations are pointing to the fact that the chemotherapy and treatment Brian got in those early days have caused some damage to certain areas of learning processing in the brain. No great surprise really. We knew that this might happen, but when faced with the decision to save his life, or deal with life long complications, we opted to save his life. This is just part of it.
Brian is just finishing up his adapted program in martial arts. We thought he was really enjoying it, but recently found out that it's only the last few minutes of class where they kind of goof around and play that he really likes, and not necessarily the martial arts part of the class, so we will let him take a break from that for now. He still takes swimming lessons, but we have started with a new company called Swimtastic. The pool is ALWAYS 91 degrees, and has a big water slide and lots of toys to play with at the end of the lesson. Having warm water makes a huge difference in enjoying swimming lessons. We'll see how much progress he makes here though.
All in all, Brian is doing well. The feeding difficulties are about the same. We are encouraged to hear that a very prominent name in the feeding disorders world has recently relocated to Omaha. She was part of the very successful program at the Kennedy-Krieger clinic in Baltimore, and is now heading up the program at the Monroe-Meyer Institute here in Omaha. Once things get settled there, we are hoping to meet with her and see what changes we can make to Brian's feeding problems. I hope she can offer something that will encourage more growth and success for Brian. He does happen to be home from school today with a nasty upper respiratory infection involving the eyes, sinuses and chest. He started on antibiotics yesterday and hopefully will kick this thing soon. It started around the first of Feb, seemed to get a little better and then progress into what it is now. Despite feeling so "icky", he still maintains the sweetest disposition.
Eric is doing fine too. He just finished up his basketball season at the Y. Despite having a losing team/season, he really enjoyed playing and improved a lot from the first time he played. This last game on Saturday, the team lost 40-something to 8. All 8 points (2 3 pointers and one 2 pointer) were scored by Eric!! He was pretty proud! He loves to play out in the driveway all the time now and has added basketball to his viewing pleasure on ESPN and in person. He has been to some Creighton games recently and is following their season as well as Texas, of course!! He'd really like to see some of the old tapes from my cousin Bobs days at Creighton. He has always known Bob was a big star on that team before moving out into the European professional circuit, but now that he plays himself, he wants to see it all for himself! Bob??? can you send him something from your "Glory days" at C.U.??? He still has the basketball you gave him!!
Eric's select baseball season is upon us now. Winter practices started in January once a week, and as the weather gets better, they will go outside. The season officially opens in April with their first game on the 4th of April. He tries to keep his strength up with pushups and situps every day, along with some other exercises recommended by his coaches. School is still going very well for him too.
Not much else to report on. Brian's donor, Mark, and his wife Gina, are doing well with their triplets. They are healthy and growing just as they should. We are enjoying our new kittens (Lily is 10 mos old, and Papi is 5 mos old). We still miss Quincy, but these two keep us laughing and happy!
Jeff and I are doing fine.......just staying busy with work and home. I am teaching 4 classes of BodyPump a week now........some days this old body feels it more than others, but I still really enjoy it. It is good for my mental health as well as my physical health. I am going on a trip this weekend for an instructor workshop in Texas. It's kind of like continuing education, along with meeting other instructors across the country. It's a quick trip, but I am looking forward to it. It is going to be my b-day present this year!!! I am also keeping busy with my involvement as moderator of the JMML online support group, being on the board of the JMML Foundation, running the website for Eric's select baseball team and my chores and responsibilities to my family. Jeff is doing the same, and does a great job of taking care of us all.
As always, we hope you and your families are well and happy, and we always look forward to hearing from you when you have time to check in. Sign the guestbook (on Brian's webpage) when you can. He is at a point where he "gets it" and likes to read what people write to him now. He LOVES jokes and riddles, so if you have any good ones to share, he enjoys reading them.
All the best,
Niki
mom to Brian, now 9 1/2 yrs old, 6 yr survivor of JMML (after 2 transplants!) website: www.caringbridge.org/co/brianspage
mom to Eric, 11 yrs old, star student and athlete, and best helper in the world!
and wife to Jeff of 20 yrs!
PLEASE VISIT: www.jmmlfoundation.org/index.php FOR MORE INFORMATION ON JMML.
Thursday, November 10, 2005 1:24 PM CST
Happy Fall everyone!
I thought I would try to update a little sooner this time. I hope this finds you all happy and healthy and enjoying the beautiful fall weather.
Since the last update Brian went in for his yearly oncology check up. It's been 6 yrs since his last transplant and all looks great. In fact, his donor DNA is still 100onor!! Yea! Brian will follow up again in a year. It's nice to feel like we have moved on from the actual leukemia, but it is never far from our memories......and because I am one of the moderators for our JMML support group online, it is never gone from my thoughts..........every day, every month it continues for a new family. It is still a very rare form of leukemia, but through the JMML foundation, we are trying to bring more attention to it so that there will be more research towards a cure. I mentioned my affiliation with the JMML Foundation in Brian's last update, but the website was not yet complete. It is ready now and I ask you to visit when you have time (www.jmmlfoundation.org/index.php).
Even though Brian is now free from this disease, there was a time when things were uncertain for him. When you all asked what you could do for him/us, we didn't have an answer, but we do now. Look through the site, read the newsletter, meet the beautiful children who are going through this tragedy, those who have survived it or those who have sadly left us. Keep checking back often as more and more families get their childrens stories listed on the site. If you'd like to make a donation in honor of Brian, it would bring us great joy. It will help every child just like Brian who is currently in treatment or every child who has yet to be diagnosed. We also have a wish list of volunteer needs to help us meet the Foundations goals (listed under "how to help"). Thank you so much!!
Brian finally made it in to visit with the ADD specialist. After evaluation they decided to try him on a new medicine to see if we can get him more focused in the right direction. We had him on it for 3 wks with no change, so we increased the dose a bit yesterday and will re-evaluate again in 3-4 wks.
Brian visited the pediatric dental clinic yesterday and all looks well with his teeth. He has a few more loose teeth that will probably be out by the end of the year. Brian had his first experience where his feelings were hurt by someone in regards to his teeth. Hurting Brian was not intentional, but his neighbor friend told him that he needed to brush his teeth better because his teeth were so yellow. He had no idea that Brian's teeth are permanently stained that way from a medication given when he was a baby to save his life. We knew this would happen, but his life was more important to us than the color of his teeth down the road!! We figured if we could get him to that point, we would worry about the yellow teeth then! He has been so innocent and unaffected by peoples stares and comments before now, but he is finally at a point where he understands a little better and I think it finally bothered him. We just explained everything to him and told him that when he was older, we would be able to change that for him. He accepted that and has moved on from it! We also explained the situation to his friend so that he would understand too.
We got through Halloween (Brian was a hippie boy--see his photo on his website) and are preparing for Thanksgiving. My dad will come out to visit us this year for the holiday. It has been three years since he was here last.......it was the post transplant follow up for my mom and things looked so good at that time..........little did we realize that within 6 months the myeloma would be raging back and taking over her body and eventually taking her life. September 30th was the 2 yr anniversary of her death. I know for me, time has eased some of the pain, but I still miss her so much! I think for my dad, the time only exaggerates the emptiness he feels with her being gone. I hope that a change of scenery and a visit with Eric and Brian will be a bright spot in his holiday this year. I spent a week back home in Colorado in September visiting my dad, my family and some of my friends. It was a great trip, but I am glad that my dad will be visiting us here now. It's really the only way he can see Brian, since a visit to the altitude in Colorado is not recommended for Brian's pulmonary hypertension. Speaking of this, Brian will follow up with the cardiologist in January with labwork and an echocardiogram to see if he is still stable or hopefully improving. Our fingers are crossed!
The boys had a fun experience here in Omaha over the Halloween weekend. The music group "Bowling for Soup" was in town for a nightime concert that was an over 18 event. Since the group knew they had many younger fans, they agreed to do a free acoustic concert during the day before their big concert. Eric and Brian really wanted to go and hear some of the songs they knew from the radio, so I took them to listen. Even though we had to wait longer than anticipated, they really enjoyed it, and after they did 4 of their songs and chatted with us a bit, they had a "meet and greet" with a few selected fans. Eric and Brian were selected and got to meet them and get a signed photo from them. I also took a photo of them with the guys and put it on the website too. They are pretty wild looking, but were VERY nice and quite fun! The boys are really getting into music a lot, and are always asking when they can go to a concert! At this point, I don't think it will happen unless we win tickets, but the day will come when we will breakdown and take them. I just don't think they realize how crowded they are, how loud, how expensive and how there will be many more songs done than they actually have heard on the radio!!! At least with this experience, it was low key and very personal.
Brian has started an adapted martial arts program and seems to really like it. His swimming lessons continue and he is improving so much! It's amazing sometimes how "normal" his life seems now. Hard to believe there was a time when we wondered if he would survive past his first, second or third birthday. Life is not always easy for him or us, but we are extremely grateful for what we have. We know it could always be worse. It was once, and it could be again, but it is manageable and more comfortable now. It isn't that way for many children/families out there. My heart and prayers go out to them all.
Both boys are doing well in school.......of course some of it is a little harder for Brian, but he works very hard. Eric brought home straight A's for his first semester of middle school.........I thought about framing them and putting MY name on them!!! Puts me to shame........I never did that good!! hee hee!! He started basketball a few weeks ago with the YMCA and is doing ok, and winter practice starts up in January for baseball. We certainly stay busy enough between the two of them! I don't know how families do it that have more than two kids!!
I think that just about wraps this up. One last bit of VERY EXCITING news for us. I just got word from Brian's donor Mark, that the triplets they were expecting the first week in January, were born this morning at 7:07 am by c-section. Ethan came out first weighing something like 3 lb 15 oz, then came Emma at 2 lb 15 oz? , and last was Brady at 3 lbs something oz (I forgot!). Ethan is having a tiny bit of trouble with his lungs, but not critical. The others are doing great and so is Gina. There were about 16 people in the delivery room........quite a production, but all went well! They will probably be in the hospital yet for another 3-5 wks. They can go home when they get the whole suck, swallow and breath down well. Hopefully they will be home by Christmas. They were born just shy of 32 wks. Ideally they would have liked them to go longer, but this is an ok time and they should be ok. We are very excited for them and welcome the babies into our extended family. Of course, it goes without saying, but Mark and Gina are a very special part of our lives..........without Mark, Brian would not be here. CONGRATS TO YOU MARK AND GINA!! We look forward to meeting Ethan, Emma and Brady one day soon!!
Thanks for listening/reading. I hope your upcoming holidays will be warm and happy. Drop us a note and let us know how you are doing and don't forget to visit the JMML Foundation website listed above too!
Take care.
All the best,
Niki
Thursday, November 10, 2005 1:24 PM CST
Happy Fall everyone!
I thought I would try to update a little sooner this time. I hope this finds you all happy and healthy and enjoying the beautiful fall weather.
Since the last update Brian went in for his yearly oncology check up. It's been 6 yrs since his last transplant and all looks great. In fact, his donor DNA is still 100% donor!! Yea! Brian will follow up again in a year. It's nice to feel like we have moved on from the actual leukemia, but it is never far from our memories......and because I am one of the moderators for our JMML support group online, it is never gone from my thoughts..........every day, every month it continues for a new family. It is still a very rare form of leukemia, but through the JMML foundation, we are trying to bring more attention to it so that there will be more research towards a cure. I mentioned my affiliation with the JMML Foundation in Brian's last update, but the website was not yet complete. It is ready now and I ask you to visit when you have time (www.jmmlfoundation.org/index.php).
Even though Brian is now free from this disease, there was a time when things were uncertain for him. When you all asked what you could do for him/us, we didn't have an answer, but we do now. Look through the site, read the newsletter, meet the beautiful children who are going through this tragedy, those who have survived it or those who have sadly left us. Keep checking back often as more and more families get their childrens stories listed on the site. If you'd like to make a donation in honor of Brian, it would bring us great joy. It will help every child just like Brian who is currently in treatment or every child who has yet to be diagnosed. We also have a wish list of volunteer needs to help us meet the Foundations goals (listed under "how to help"). Thank you so much!!
Brian finally made it in to visit with the ADD specialist. After evaluation they decided to try him on a new medicine to see if we can get him more focused in the right direction. We had him on it for 3 wks with no change, so we increased the dose a bit yesterday and will re-evaluate again in 3-4 wks.
Brian visited the pediatric dental clinic yesterday and all looks well with his teeth. He has a few more loose teeth that will probably be out by the end of the year. Brian had his first experience where his feelings were hurt by someone in regards to his teeth. Hurting Brian was not intentional, but his neighbor friend told him that he needed to brush his teeth better because his teeth were so yellow. He had no idea that Brian's teeth are permanently stained that way from a medication given when he was a baby to save his life. We knew this would happen, but his life was more important to us than the color of his teeth down the road!! We figured if we could get him to that point, we would worry about the yellow teeth then! He has been so innocent and unaffected by peoples stares and comments before now, but he is finally at a point where he understands a little better and I think it finally bothered him. We just explained everything to him and told him that when he was older, we would be able to change that for him. He accepted that and has moved on from it! We also explained the situation to his friend so that he would understand too.
We got through Halloween (Brian was a hippie boy--see his photo on his website) and are preparing for Thanksgiving. My dad will come out to visit us this year for the holiday. It has been three years since he was here last.......it was the post transplant follow up for my mom and things looked so good at that time..........little did we realize that within 6 months the myeloma would be raging back and taking over her body and eventually taking her life. September 30th was the 2 yr anniversary of her death. I know for me, time has eased some of the pain, but I still miss her so much! I think for my dad, the time only exaggerates the emptiness he feels with her being gone. I hope that a change of scenery and a visit with Eric and Brian will be a bright spot in his holiday this year. I spent a week back home in Colorado in September visiting my dad, my family and some of my friends. It was a great trip, but I am glad that my dad will be visiting us here now. It's really the only way he can see Brian, since a visit to the altitude in Colorado is not recommended for Brian's pulmonary hypertension. Speaking of this, Brian will follow up with the cardiologist in January with labwork and an echocardiogram to see if he is still stable or hopefully improving. Our fingers are crossed!
The boys had a fun experience here in Omaha over the Halloween weekend. The music group "Bowling for Soup" was in town for a nightime concert that was an over 18 event. Since the group knew they had many younger fans, they agreed to do a free acoustic concert during the day before their big concert. Eric and Brian really wanted to go and hear some of the songs they knew from the radio, so I took them to listen. Even though we had to wait longer than anticipated, they really enjoyed it, and after they did 4 of their songs and chatted with us a bit, they had a "meet and greet" with a few selected fans. Eric and Brian were selected and got to meet them and get a signed photo from them. I also took a photo of them with the guys and put it on the website too. They are pretty wild looking, but were VERY nice and quite fun! The boys are really getting into music a lot, and are always asking when they can go to a concert! At this point, I don't think it will happen unless we win tickets, but the day will come when we will breakdown and take them. I just don't think they realize how crowded they are, how loud, how expensive and how there will be many more songs done than they actually have heard on the radio!!! At least with this experience, it was low key and very personal.
Brian has started an adapted martial arts program and seems to really like it. His swimming lessons continue and he is improving so much! It's amazing sometimes how "normal" his life seems now. Hard to believe there was a time when we wondered if he would survive past his first, second or third birthday. Life is not always easy for him or us, but we are extremely grateful for what we have. We know it could always be worse. It was once, and it could be again, but it is manageable and more comfortable now. It isn't that way for many children/families out there. My heart and prayers go out to them all.
Both boys are doing well in school.......of course some of it is a little harder for Brian, but he works very hard. Eric brought home straight A's for his first semester of middle school.........I thought about framing them and putting MY name on them!!! Puts me to shame........I never did that good!! hee hee!! He started basketball a few weeks ago with the YMCA and is doing ok, and winter practice starts up in January for baseball. We certainly stay busy enough between the two of them! I don't know how families do it that have more than two kids!!
I think that just about wraps this up. One last bit of VERY EXCITING news for us. I just got word from Brian's donor Mark, that the triplets they were expecting the first week in January, were born this morning at 7:07 am by c-section. Ethan came out first weighing something like 3 lb 15 oz, then came Emma at 2 lb 15 oz? , and last was Brady at 3 lbs something oz (I forgot!). Ethan is having a tiny bit of trouble with his lungs, but not critical. The others are doing great and so is Gina. There were about 16 people in the delivery room........quite a production, but all went well! They will probably be in the hospital yet for another 3-5 wks. They can go home when they get the whole suck, swallow and breath down well. Hopefully they will be home by Christmas. They were born just shy of 32 wks. Ideally they would have liked them to go longer, but this is an ok time and they should be ok. We are very excited for them and welcome the babies into our extended family. Of course, it goes without saying, but Mark and Gina are a very special part of our lives..........without Mark, Brian would not be here. CONGRATS TO YOU MARK AND GINA!! We look forward to meeting Ethan, Emma and Brady one day soon!!
Thanks for listening/reading. I hope your upcoming holidays will be warm and happy. Drop us a note and let us know how you are doing and don't forget to visit the JMML Foundation website listed above too!
Take care.
All the best,
Niki
Thursday, November 10, 2005 1:24 PM CST
Happy Fall everyone!
I thought I would try to update a little sooner this time. I hope this finds you all happy and healthy and enjoying the beautiful fall weather.
Since the last update Brian went in for his yearly oncology check up. It's been 6 yrs since his last transplant and all looks great. In fact, his donor DNA is still 100% donor!! Yea! Brian will follow up again in a year. It's nice to feel like we have moved on from the actual leukemia, but it is never far from our memories......and because I am one of the moderators for our JMML support group online, it is never gone from my thoughts..........every day, every month it continues for a new family. It is still a very rare form of leukemia, but through the JMML foundation, we are trying to bring more attention to it so that there will be more research towards a cure. I mentioned my affiliation with the JMML Foundation in Brian's last update, but the website was not yet complete. It is ready now and I ask you to visit when you have time (www.jmmlfoundation.org/index.php).
Even though Brian is now free from this disease, there was a time when things were uncertain for him. When you all asked what you could do for him/us, we didn't have an answer, but we do now. Look through the site, read the newsletter, meet the beautiful children who are going through this tragedy, those who have survived it or those who have sadly left us. Keep checking back often as more and more families get their childrens stories listed on the site. If you'd like to make a donation in honor of Brian, it would bring us great joy. It will help every child just like Brian who is currently in treatment or every child who has yet to be diagnosed. We also have a wish list of volunteer needs to help us meet the Foundations goals (listed under "how to help"). Thank you so much!!
Brian finally made it in to visit with the ADD specialist. After evaluation they decided to try him on a new medicine to see if we can get him more focused in the right direction. We had him on it for 3 wks with no change, so we increased the dose a bit yesterday and will re-evaluate again in 3-4 wks.
Brian visited the pediatric dental clinic yesterday and all looks well with his teeth. He has a few more loose teeth that will probably be out by the end of the year. Brian had his first experience where his feelings were hurt by someone in regards to his teeth. Hurting Brian was not intentional, but his neighbor friend told him that he needed to brush his teeth better because his teeth were so yellow. He had no idea that Brian's teeth are permanently stained that way from a medication given when he was a baby to save his life. We knew this would happen, but his life was more important to us than the color of his teeth down the road!! We figured if we could get him to that point, we would worry about the yellow teeth then! He has been so innocent and unaffected by peoples stares and comments before now, but he is finally at a point where he understands a little better and I think it finally bothered him. We just explained everything to him and told him that when he was older, we would be able to change that for him. He accepted that and has moved on from it! We also explained the situation to his friend so that he would understand too.
We got through Halloween (Brian was a hippie boy--see his photo on his website) and are preparing for Thanksgiving. My dad will come out to visit us this year for the holiday. It has been three years since he was here last.......it was the post transplant follow up for my mom and things looked so good at that time..........little did we realize that within 6 months the myeloma would be raging back and taking over her body and eventually taking her life. September 30th was the 2 yr anniversary of her death. I know for me, time has eased some of the pain, but I still miss her so much! I think for my dad, the time only exaggerates the emptiness he feels with her being gone. I hope that a change of scenery and a visit with Eric and Brian will be a bright spot in his holiday this year. I spent a week back home in Colorado in September visiting my dad, my family and some of my friends. It was a great trip, but I am glad that my dad will be visiting us here now. It's really the only way he can see Brian, since a visit to the altitude in Colorado is not recommended for Brian's pulmonary hypertension. Speaking of this, Brian will follow up with the cardiologist in January with labwork and an echocardiogram to see if he is still stable or hopefully improving. Our fingers are crossed!
The boys had a fun experience here in Omaha over the Halloween weekend. The music group "Bowling for Soup" was in town for a nightime concert that was an over 18 event. Since the group knew they had many younger fans, they agreed to do a free acoustic concert during the day before their big concert. Eric and Brian really wanted to go and hear some of the songs they knew from the radio, so I took them to listen. Even though we had to wait longer than anticipated, they really enjoyed it, and after they did 4 of their songs and chatted with us a bit, they had a "meet and greet" with a few selected fans. Eric and Brian were selected and got to meet them and get a signed photo from them. I also took a photo of them with the guys and put it on the website too. They are pretty wild looking, but were VERY nice and quite fun! The boys are really getting into music a lot, and are always asking when they can go to a concert! At this point, I don't think it will happen unless we win tickets, but the day will come when we will breakdown and take them. I just don't think they realize how crowded they are, how loud, how expensive and how there will be many more songs done than they actually have heard on the radio!!! At least with this experience, it was low key and very personal.
Brian has started an adapted martial arts program and seems to really like it. His swimming lessons continue and he is improving so much! It's amazing sometimes how "normal" his life seems now. Hard to believe there was a time when we wondered if he would survive past his first, second or third birthday. Life is not always easy for him or us, but we are extremely grateful for what we have. We know it could always be worse. It was once, and it could be again, but it is manageable and more comfortable now. It isn't that way for many children/families out there. My heart and prayers go out to them all.
Both boys are doing well in school.......of course some of it is a little harder for Brian, but he works very hard. Eric brought home straight A's for his first semester of middle school.........I thought about framing them and putting MY name on them!!! Puts me to shame........I never did that good!! hee hee!! He started basketball a few weeks ago with the YMCA and is doing ok, and winter practice starts up in January for baseball. We certainly stay busy enough between the two of them! I don't know how families do it that have more than two kids!!
I think that just about wraps this up. One last bit of VERY EXCITING news for us. I just got word from Brian's donor Mark, that the triplets they were expecting the first week in January, were born this morning at 7:07 am by c-section. Ethan came out first weighing something like 3 lb 15 oz, then came Emma at 2 lb 15 oz? , and last was Brady at 3 lbs something oz (I forgot!). Ethan is having a tiny bit of trouble with his lungs, but not critical. The others are doing great and so is Gina. There were about 16 people in the delivery room........quite a production, but all went well! They will probably be in the hospital yet for another 3-5 wks. They can go home when they get the whole suck, swallow and breath down well. Hopefully they will be home by Christmas. They were born just shy of 32 wks. Ideally they would have liked them to go longer, but this is an ok time and they should be ok. We are very excited for them and welcome the babies into our extended family. Of course, it goes without saying, but Mark and Gina are a very special part of our lives..........without Mark, Brian would not be here. CONGRATS TO YOU MARK AND GINA!! We look forward to meeting Ethan, Emma and Brady one day soon!!
Thanks for listening/reading. I hope your upcoming holidays will be warm and happy. Drop us a note and let us know how you are doing and don't forget to visit the JMML Foundation website listed above too!
Take care.
All the best,
Niki
Friday, August 19, 2005 9:11 AM CDT
Dear Friends and family,
Well, well, well........I'm FINALLY getting around to writing this update! It just gets harder and harder to find the time to sit down and write. I guess that is mostly because life is just busy, but in a good way. I hope that all has been well for you in the past 8 months and hope that you will have time to fill us in on your lives as well!
Ok, we'll start off with Brian first (since this is supposed to be about HIM!) Some things have remained the same since I wrote last December. He still takes swimming lessons, he still has feeding and attention problems. We spent several months going back to work with a therapist at the feeding clinic here in Omaha and made a few changes, but mostly things are still the same. For the most part, Brian still does not enjoy eating, still has aversions to certain types of foods that make him gag (even by sight!), and meals are generally a pain for him and us because we have to constantly prompt him to eat his bites and take his drinks. Some days there are things that motivate him to do it quickly on his own, but other days those things don't work. I'm pretty much resolved to the fact that none of this will really change until he understands enough in his own mind that it's just something he has to do to live whether he likes it or not. He does have things he LIKES to eat or taste or take bites of, but not in any great amount........and not a great amount of calories. He is finally up to the 50 lb mark though.......that is a great milestone!!
As for the attention problems, his pediatrician started him on some meds. We went through a series of drugs in different doses and even mixtures of different drugs.......nothing changed his attention problems. The only thing that they did was keep him up at night. The pediatrician felt to go any further meant seeing a doctor with more experience in this. He has an appt in Sept. with that doctor. We took him off all meds in the meantime since they weren't working and he has since gone back to sleeping just fine.
Brian also followed up with cardiology for his pulmonary hypertension and all is still stable with that. He continues to take medication for that and hopefully it is helping to slow the disease down. He will follow up again in December.
He followed up with the endocrinologist and because he has shown some growth (little, but it's there), they have finally increased his dose of growth hormone injections. He follows up again in October.
June 11th was the 6 yr anniversary of Brian's second transplant, and the date came and went without us even remembering!! That is a good sign I think, to show life does finally move on! We will never forget those days/dates, but they are not in the forefront of our lives anymore. We assumed we were done following up with the oncologist after the 5 yr mark, but I found out that they DO want to continue to follow him for long term effects, so we set up an appt for Sept. I will try to let you know the details of this and the others if anything is serious or worrisome.
Brian had been doing weight training weekly to help strengthen his upper body better, however, he kept complaining of pain in his elbows and occasionally in his knees. He would wake up crying with pain in the middle of the night. Initially, we just gave him motrin every night before bed and that worked for awhile, but the pain would still show up enough during the day so we followed up with the rheumotologist again. After many tests (xrays, MRI, bone densitiy study, labs), it was determined that Brian had some osteoporosis again. We put him back on the Vit D and calcium to see if that would help with the bone density. The doc wasn't sure if the pain was coming from the osteoporosis or something else. Things seemed ok for awhile, but the pain eventually came back. After another visit with the doc, he found that Brian had a very slight contracture of the elbows and thought OT might help. Brian has been following up with the OT every week for the past month or so and with some stretching and exercises, the degree of contracture has gone down. It means doing these stretches and exercises every day, which just adds one more thing to get done for us, but we try to work it into the day! We have been able to cut down on the motrin at least without any complaints of pain yet, so it might be working. We will eventually cut out the motrin altogether to see if he is without pain now. His last OT follow up is today. The weight training is on hold until we feel Brian can do it without this pain in his elbows.
Despite his growth, Brian is still way below where he should be and looks to be about 5-6 yrs old. His hair slowly fills in a tiny bit more every year, but is still not completely normal. (he now wants to let it grow LONG just like his big brothers---you know, that long mop look the kids are wearing now!!.....but his hair is so wirey I don't think it would lay down like Eric's) He got new glasses this year because his last pair were finally too small for his face. He has lost 4 teeth in the past 2 months (13 altogether to Eric's 8, so Eric is bothered by that!....you know, everything is a competition between siblings!) so the "tooth fairy" has been busy.
Aside from all of these issues, Brian is really doing well. He is still just the happiest kid with the sweetest disposition. He is still very innocent about so many things, but we talk about and explain things to him as much as we can and as much as he can understand. His favorite things to do are to ride his bike, play Uno, go to Putt Putt or play mini putt on the computer. His favorite TV shows are AFV (America's Funniest Videos) and Zaboomafoo (PBS show about 2 brothers and a ring tailed lemur who teach all about different animals). His best friends are a brother and sister that live behind us. He has finally had a sleeover here at our house and now wants to do it all the time! He will turn 9 yrs old next Wed (24th) and starts school (3rd grade) the same day. We have a birthday party planned for this Sat. at a place called Planet X where they have indoor putt putt, mini bowling, etc. He invited 6 friends plus his brother, so there will be 8 kids in all. Fun, fun, fun!
Now about Eric. He finished up 4th grade in May and was on the honor roll. He will be in a middle school this year. It is 5th - 8th. His day will start a lot earlier than it has in the past. He has to be at school at 7:35am and they start at 7:45. However, he gets out at 2:30. Eric tried out for a select baseball team last summer and made it, so they began practice in the fall once a week. They took a break and then began indoor practice in January once a week until the weather was good enough in the spring to work outdoors. The season started in April and they were supposed to have about 60 games. It turned out to be about 32 /- with rain outs or cancellations, etc. They had 4 tournaments also and one of those was in Kansas City, Mo. over Memorial Day wkd. This was the first year they were all together as a team, and despite the fact that they had a losing record, they did well and made great improvements. Eric was their #1 pitcher and also played third base and outfield. He enjoyed the experience and tried out again this year. He made it and they just began fall practice again. He is working with a pitching and hitting coach to improve his skills for next year. He also recently got contacts and he is doing really well with them. It should make it easier for him to play sports too. He is signed up with the Y to play basketball this fall for the first time. He loves to play out in the driveway and has never had interest in being on a team before, but decided to try it this year.
Otherwise, all is well with Eric. He is still a great kid, a great helper and fun to be around.
Jeff and I have just been busy keeping up with our work and the kids. I am still teaching BodyPump 3 times a week and love it! We had quite an ordeal in the spring trying to get new carpet layed in the house, but finally got it done. The wrong carpet was layed down and so they had to come back out and do it again. That was a pain, but it's nice now and we ended up with a better carpet in the long run because of the mistake.
We also celebrated our 20th wedding anniversary in June. Whoo-hoo!! Amazing that so much time has gone by.....we've sure been through a lot!
We lost our pet cat, Quincy, in Feb. He suddenly got very sick, wouldn't eat and after lots of care and evaluation was found to have multiple masses internally that were probably lymphoma. It was really hard to lose him after 13 yrs. They are so much a part of your family. We are just now looking into getting a new pet. I think we are ready. We wanted to wait until after our summer vacations before we brought anything home though. In July we traveled to Myrtle Beach, SC. We stayed at a great little B&B just 2 blocks off the beach and had plenty of pool time and beach time. We also got in LOTS of putt putt and the boys enjoyed their first try at "real" golf. It was a par 3 9 hole course. They LOVED it! We will look into trying that here in Omaha now too. While we were in South Carolina, we met up with one of our fellow JMML cancer families (The Jones') for the first time. We have been in contact online for 6 yrs but had never met. They live just across the border in North Carolina (a little over an hour from Myrtle Beach). They came down to Myrtle Beach and we met up with them at Alligator Adventure one afternoon. The next trip had us going up to visit with them at a beach house they had rented for their family in Oak Island, NC for the afternoon. We had a blast and it was good to see the two leukemia survivors together laughing and playing (both 6 yr survivors). Our families felt very comfortable together and it felt like we had been long time friends. We look forward to getting together again in the future. ( I have posted new photos on the webpage photo album as well as in the Zeocast window on the front of Brian's webpage--check them out!) We also met a very nice family at the B&B from Hershey, Pa. We hope to stay in touch with them and perhaps meet up again in Myrtle Beach next year!
Our second trip was just last week taking us to Wisconsin to visit with Brian's bone marrow donor and his wife. They live in between Madison and Milwaukee. While were there we went to a place outside Madison called the Cave of the Mounds. REALLY COOL tour! Check it out if you are ever near by. We also had a tour of the National Weather Service where Mark works. Brian was kind of bored, but Eric found it pretty interesting. We had a great visit with Mark and Gina, who are expecting TRIPLETS!! Boy how their life is about to change! They found out that they are going to have 2 boys and 1 girl while we were there. We are so excited for them and look forward to meeting them all! After we left them, we went up to stay at a place called Treasure Island in the Wisconsin Dells. Lots of fun, sun, water, putt putt, etc. When we left there, we headed towards home but stopped first in Dyersville, Iowa to visit the Field of Dreams from the movie. It was really cool. There are photos of all of this as noted above.
I think that pretty much brings us up to date. The only other thing I want to mention is that I was asked to be on the board of a new foundation, that is near and dear to me. A fellow JMML family decided that it was time to put together something that would allow all families going through JMML a better source of support and resources than what are currently available. Because JMML is a rare form of leukemia, there is not as much out there as there is with other leukemias. Putting together a foundation is a huge undertaking and one that many of us who have come before have "wished" for, but Fred and his wife are doing more than wishing......they are taking action and are moving forward. I was asked to be a part of this as a fellow cancer parent to bring to the board the real "face" of what JMML is, and the hope of surviving this disease to future patients and their families by sharing Brian's story. I am not very good with all the legal and technical and financial issues of being on a board, but I can add the personal side of what the disease is, and what it does to a child and to their family. We have members who are more experienced in all the other issues of starting and running a foundation, thank goodness! I am learning a lot about foundations though and how they work, but I can use any help available if any of you have experience with this sort of thing, OR if any of you have services that you can volunteer to us as we progress forward. My next assigned job is going to be with fundraising..........I'm clueless at this point as to where to start and how to go about this. If you have suggestions, websites to research, or know people who do this for a living, please contact me! We are also open to help from anyone with legal experience, counseling or social work (especially those with experience in issues relating to cancer), and oncology nurses and physicians who are a part of this experience on a daily basis.........of course, at this point, whatever you offer would be on a volunteer basis, but we welcome whatever can be offered. The foundation has a medical symposium set up in December where many oncologists will gather to talk about the latest news and research in JMML. I will leave you with the message from the president of The JMML Foundation at the end of my note to get a better idea of our mission.
I appreciate whatever help and advice you can offer me. I am truly honored to be a part of this foundation and I hope I can bring something worthwhile to it to help others along the way. The foundation does have a website that should be up and running by the end of the month so I will send that link when it is finished.
Thanks for being so patient and waiting for this latest update. I am sorry it was so late in coming!
Jeff, Eric, Brian and I all wish you the best in your own lives and hope to hear how you have been over the past 8 months!
Take care,
Niki
Message from the President
I founded The JMML Foundation in October 2004, in order to address some of the problems that my wife and I encountered when our daughter was diagnosed with JMML in January 2003. Information was hard to find on the Internet, limited in scope, written in highly medical terms, and/or outdated. The expected outcome for treatment through chemo alone is still extremely low, and only a bone marrow transplant offers even a scary 50-50 chance of survival.
The first thing that made our family find hope was when one other family with JMML pointed us to an online support group. There we met a terrific group of loving, caring people who helped us through the toughest moments of Chiara’s treatment. But we also learned that these families shared our concerns with the same issues. My hope now is that through the work of a Foundation focused solely on JMML, empowered by the collective support of all families dealing with JMML and their motivated friends,in 10 years, the odds for any child with JMML will be as good as those for a child with a more common leukemia.
No child should have to suffer from this horrible disease. I am confident that through the will and actions of all of our families and friends combined, we can greatly improve the lives of all kids and families that will have to deal with JMML in the future.
Yours in hope and action,
Fred Dini
Chairman, President, and Founder
The JMML Foundation
May 2005
Monday, December 20, 2004 8:33 PM CST
~~~New photos added to Zeocast above and on photo page!~~~
*** UPDATE COMING SOON!! 8/05 ***
Dear Friends and Family,
Happy Holidays! I hope this finds you all happy and healthy.
I apologize once again for getting this update out late......you know, life happens!
Brian had his big cardiac followup a few weeks ago; this is the one we were very anxious to get the results of. It has been 3 mos since Brian started the new medication to help slow the progression of his pulmonary hypertension. His doctor told us this would be the earliest we might be able to see improvement in the pressures in his heart. We were disappointed to hear that there has been no change, BUT, happy that things are at least not worse. His labwork shows that the medicine is still not harming his liver, which is also good news. We will follow up in 3-6 mos with another echocardiogram and labs. I hope the pressure in his right ventricle will be down by then. I was encouraged to learn that if Brian begins to have trouble with this disease, it won't be overnight.......it would be a slow progression downward, so it would give us time to prepare.......somehow that makes me feel better.
As of right now, you still wouldn't know that Brian has this disease .........he's a bundle of energy!
He is still taking swimming lessons and doing really well........it's hard to believe just two summers ago he was so frightened of the water! He has also started a weight training class (taking after mom??) that is through the Paralyzed Veterans Administration. It is set up for kids with disabilities of all kinds, and his trainer is in a wheelchair himself. They are working on strengthening Brian's muscle tone. Low muscle tone affects so many different aspects of his life, so we hope this will help. He has done it for a month and loves it! He likes to come down to the basement with me and do his workout when I do mine!
That's about it on Brian I think......he did have to have two baby teeth pulled today at the dental clinic........they weren't coming out on their own and the new teeth would not come in without this help. I was pretty nervous about him doing this because he is very scared of just getting his teeth cleaned.......I never told him what he was there for. I didn't like doing that, but I think it was the right thing for him. He went back and did great and didn't even realize what they did.........I asked him if he knew what they did and he said no. When I told him he just said, "oh". His only complaint was that he didn't like the way his lip felt (numb) and couldn't stop slobbering! He'll hit paydirt tonight from the Tooth Fairy! He's excited about that........he's also excited for Christmas to get here! It's fun to watch him......it's like he's making up for all those years when he was not really part of "our" world..........when he was too sick, or too young or too developmentally delayed to understand. He was so excited when I put up the stockings on the fireplace that he pulled his down and the stocking holder crashed in between his eyes ("broke his head" is what he said). That left a real nice bruise and scratch! It was right before we took photos for our Christmas cards too! Figures!
Now on to Eric-He is still doing well in school and was selected to be in the special singing group at his school called Free Spirit. In addition to singing with his 4th grade class, this group spent a day going around town to sing. He was also selected to write for the newspaper. They meet for 3 wks each quarter to put together their school newspaper. He finished up Fall baseball and his team did very well. He was selected to the All Star game at the end of the season, but ended up getting sick on the day of the game, so he didn't get to play. He will begin indoor practice for next years select team in January. He really wants to pitch so he has been participating in a pitching clinic and he practices every day in the basement. His 10th b-day is approaching the first part of January and we are making plans for his party. Hard to believe we've got a kid who is 10! He's not really a kid anymore! How long til the hormones set in and start driving us crazy? I hope he will still be the nice kid has always been.
There's not much new with Jeff and me.........Jeff just hit the big 5-0! Hard to believe! He looks pretty good for 50! He keeps busy with work and his "to do list" at home--I'd be lost without his help around here. I don't miss the days when he used to work 24 hr shifts......I like having him around more and I know the kids benefit too.
I'm still teaching Body Pump 2-3 times a week and loving it........my classes are now so full that people have to sign up ahead of time to assure their place in the class! I'll take that as a good sign. There are a few members in my class who are interested in becoming instructors too, so I am encouraging them to go through the training. I've met some really nice people through my class, and it makes me feel like I am finally putting down roots in the community. It's not Colorado, but the people here surely make up for what I miss back home. I need to get back to studying for my personal trainer certification, but it always seems like there is something else to do.........I just need to make it more of a priority again.
Anyway, I think that brings us up to date. It's going to be a very cold Christmas here this year, but not necessarily a white one. Write or email when you can to let us know how you are.
We send our best wishes out to all of you, not only during the holidays, but always.
Niki
Tuesday, October 19, 2004 12:47 AM CDT
Brian had his last labwork check up a few weeks ago..........it is done to check his liver function studies because the new medicine he is taking for the pulmonary hypertension can be toxic to the liver. So far, labs are normal...........I may be repeating myself here, so I apologize if I have already posted this before.....I am not sure if the toxicity to the liver comes over time, or if it would have shown up by now. They check this every month for 3 months, then if all is well, they check it quarterly. He will see the cardiologist on Nov 18th and will get labs, an echocardiogram and do a 6 min walk (they just check to see how far he walks in 6 min and what his symptoms are and compare it to the test done before he started the meds to see if there is improvement in distance, energy, etc.) I am most interested to see what the echo shows for blood pressure in the right ventricle. The previous one showed a pressure of 75, with the heart catheterization showing it to actually be 85..........normal should be 25...........so I would love to see that the pressure has come down from the 75.........that would really let us know that this medicine is working. I will certainly keep you posted on that after we get the news.
Otherwise around here it is business as usual. I took a quick trip back home to Colorado over the first wkd in Oct. to see my dad and visit family and sort of "celebrate" my mom's 1 yr angel anniversary...........it was tough though and emotional. Mostly we are amazed at how fast it has gone.........how could it be that we have continued on without her for a YEAR!! Seems like just yesterday sometimes.........main thing an anniversary like this does is remind you of what you have lost and bring about all those sad feelings of loss you have without them here.........I can't even imagine how much worse that is when it is your child who has gone.........I thought of all of the angel parents on this day as well and toasted them all along with my mom.
Eric finished up his fall baseball league last weekend and his team went 7-3. Only one other team had the same record.........they were the only two winning teams overall. When the season ended, the coaches from all the teams selected players to play in the All Star game coming up this next weekend. We know that Eric is quite talented, and he has always been selected to things like this in past seasons, but this year we saw some kids that were really consistantly better than him so we never really expected him to be selected this time........even he didn't expect it, but we received a call last night about "practice".........I was dumbfounded and asked if they were talking about the program we had just finished (because he is also in a select league for next year)........they said yes. I asked if they were talking about practice for the All Star game, and they said yes........I said, are you trying to tell me that Eric was selected?? They said, "yes, didn't you know?" I said, NO! Anyway, long story short, we were shocked and amazed and told Eric the news as well......he was surprised too.........they must have seen things that we didn't........so, now we have one more weekend of baseball til next year. He's doing well in school too, as usual (VERY PROUD PARENT SPEAKING HERE!!......envious too, cuz I never did as well as he is!) He was selected to their special music group (had NO idea he could sing!!--heehee) and also the school newspaper. Anyway, he is everything we could have ever dreamed of in a kid.......healthy, smart, cute, talented, kind, polite, helpful, etc. Of course, we are equally, if not more proud of Brian, because everything he is now has not come easily.......let alone just being alive! He is now riding his bike without training wheels (only when he rides at the school track, but not ready for sidewalks/driveways yet! too many turns, things in the way!) and we are thinking of putting him in special class for strengthening and toning muscles, etc. It is adapted for kids with special needs, etc. He still takes swimming lessons every week and continues to improve with that as well. He's keeping up in school and gets better and better with things he struggles with initially. The rest is the same..........feeding is a struggle/stress, but I have contacted the local feeding program here and we are going to meet again to see what changes we can make.
Jeff is busy as usual with his list of projects to be done around the house, etc. We love baseball and are tuned in every chance we get to watch the playoffs.........rooting for the underdog Red Sox but split on the Astros/Cardinals series (he wants Houston and I want St. Louis.......Eric will be fine either way it turns out)
I am busy with home responsibilities as well as my Body Pump classes...........we have a big launch coming up this Sat. where we introduce the newest music release to our club........it's usually a bigger event than just regular classes..........sort of a party after you work out, so I am a little nervous about that..........but I know it will be fine. I've been putting in a lot of time to practice and have been filling in for other instructor's classes, so I will be sort of relieved to be back to my regular teaching schedule after the launch is done.
I've probably left something out, but I think that is enough for now. We got Brian's school photo back, but I am waiting for Eric's before I scan and post them. I will let you know when they are uploaded to the webpage.
Thanks for checking on us. I hope all is well with all of you too.
Niki
Thursday, September 2, 2004 9:43 AM CDT
Hello all!
I just wanted to send out a quick update to let you know the latest on Brian. I want to try and keep up on this sooner than I have in the past!!
Brian started his new medicine for the pulmonary hypertension 1 month ago. It is a tiny pill, cut in half and taken twice a day. He just chews it up (doesn't taste too good!) with OJ and gets it down......what a trooper! He also started the oxygen at night, and although he complained about it every night for about a week, he still did it. We have to put a little bit of paper tape on the nasal cannula to keep it from coming out of his nose at night, and when he wakes up in the morning, he just takes off the tape and cannula and comes downstairs to watch his morning shows!
He had his first check up with the cardiologist since starting the meds on Mon. the 30th. The doc said he looks good, and the labs he had done were all normal!! (no sign of liver damage.....hopefully it won't ever show up!!) So, he will continue with the same dosage and have the labwork repeated in another month. Two months from now, they will recheck labs again, as well as repeating an echocardiogram (to measure the pressure in the heart chambers) and a 6 min walk. We aren't positive, but it seems like Brian's energy level has increased a bit since starting this new medicine.......how that could be possible, we don't know........the kid had ENOUGH energy already!! It could be psychological on our part though!!
It seems that many of you misunderstood some of the details of Brian's new diagnosis and future treatment. Although the possibility still remains that he might one day need a lung transplant, it is not something we are in the process of starting right now. It is the doctors belief that Brian will need this at some point in the future, but only when his lungs fail completely......right now they still function, and with the new medication on board, this lung failure could be held off longer than if he were not being treated at all. So to answer one of your questions, no, we are not trying to find a donor right now. If/when that day comes, I will let you know, but I pray that it is a LOOOOOOOONG time from now!! There is no way of knowing when that day will come. I have heard that there are some patients who have remained like Brian for years before needing transplant, so that is what we are hoping for too.
We had Brian's 8th b-day party at Putt Putt this year. He loves to play and they have a pretty good deal for birthdays. He even got two "home" in ones (getting his sports mixed up a little!--->Home run + Hole in one!!) I posted photos from his party on the photo page of his website. He even had his name up on the Putt Putt marquee! The day after his party, we went to Kansas City to stay at the Great Wolf Lodge. They have an indoor water park there, as well as an outdoor pool area. It has a restaurant there, a small deli/cafe, a gift shop, a huge arcade and a pizza hut. They let you come in and use the water park beginning at noon on the day of check in (even though you can't check into your room until 3pm) and stay up until closing (10pm) on the day of departure. They have showers and lockers to put your gear when you no longer have your room. We had a great time and will definitely go back. Maybe next time we will go to one in the Wisconsin Dells and tie it into a visit with Brian's donor Mark, and his wife Gina. I also posted photos from our trip to KC. The last bit of our whirlwind weekend before school started was a trip to the zoo on Brian's b-day. He loves going to the zoo, and we haven't been there for a year. It was a beautiful day weather wise, and not very crowded. Brian has been telling EVERYONE about what stood out most to him at the zoo and it was definitely the Gorillas. They have a new gorilla exibit at our zoo. The indoor exhibit had one of the large males charging the window at Brian! It's a good thing that glass was there.......that was a little scary! The outdoor exhibit had a gorilla doing some rather gross things........I won't tell you (if you talk to Brian, he will be happy to tell you!!), but it was pretty disgusting and many of the adults who watched this all walked away gagging..........I'm sure you can just imagine!! Anyway, we had a good day. The next day the kids started school and so far, things are going ok. 4th grade sure has a LOT of homework though!! Eric has had something every night!
The last update, I wrote that Eric was trying out for the select baseball team for next year. Well, HE MADE IT!! They have already begun meeting once a week to practice. He's also starting fall ball which will last about 5 wks.
In the last update, I was waiting to hear if I had passed my Body Pump certification. I am happy to say that I did, so now it is official.......I am a Body Pump instructor!! Whoo-hoo! Since school has started back, my class size has grown too and it's so much fun! There is a lot more energy in a larger class! I know I have lots of room to improve my skills, but I can do that now without worrying about having to re-test. I can just concentrate on improving myself as an instructor and trying to have a lot more fun!!
After I re-read the last update, it seemed that something was missing.......I talked all about Brian, and a little about Eric and me, but I left out Jeff!!! It was as if he wasn't even part of our family!! Ooooops! It wasn't intentional, but I guess there just wasn't much to report........ He's been very busy with work and then with home projects as well. He did get a cool new car! With gas prices continuing to soar, it just wasn't practical to have a truck eating up all that gas, and with our 4th winter in Omaha approaching, leaving his vehicle parked outside again was not appealing either. So, with lots of hard work, and re-organizing the garage, he now gets to park in our 2 CAR GARAGE!! Imagine that!! Two cars actually in a two car garage!! No more scraping and digging out of the snow and cold just to go to work! He also has his list of "to do's" that are never ending.......scratch off the ones you get done, and replace them with twice as many more "to do's!" He does have a few days off right now through the Labor day holiday, so that will be a nice break from work, but give him more time to work on that list!!
Lastly I am sad to report that I have had to add more angel wings onto some of my fellow JMML families. It never gets any easier. Every single child lost to this dreaded disease takes another piece of my heart. My thoughts and prayers go out to their families and to all of the kids who still battle the disease. Feel free to click on their websites on the front of Brian's webpage to send your support. You'd be surprised at how much even cyber support from total strangers can be of help.
I wish you all a happy Labor day holiday! We will check in again after Brian's next visit with cardiology and endocrinology at the end of September. Take care.
Niki and the "boys"---->Jeff, Eric and Brian
Saturday, July 31, 2004 4:50 PM CDT
Dearest friends, family and supporters,
Time sure flies doesn't it? I can't believe it's been since Valentines day since we last updated on Brian, and now we are approaching his 8th birthday! I'm not really sure where to start. It seemed for a few months after the last update, not much was happening, so there wasn't much need to write. Then, little by little, there were a few things to write about, but I kept putting it off til I had more to write, or more time, whichever came first. Now here I am again with LOTS to report, and still no time, but I just have to make myself sit down and get it done.
I think I will start backwards........from Feb to now. Feeding issues are the same.......he's doing better with eating more solid choices, but still can't eat large quantities of them to get enough calories eating only solids....so we still puree a lot of his food and add calories to it with vegetable oil. He was waiting to have an esophogram to see if they could explain why the esophogus looked like it was spiral shaped from his GI scope........that turned out to show nothing abnormal. So, we muddle on with the same old struggles in feeding. He is back to full time oral feeds during the day and gets one bolus feed of formula at night just to supplement his needs.
Brian's endocrine issues are stable.......everything has been checked recently and all of his labs are fine and correlate with his growth......he has grown 3 " since we began the growth hormone shots last October. His weight is up to about 46 lbs and holding. I have more to report on Brian more recently, but I will get to that when I catch up to the present day...........
We had a nice trip to Dallas over spring break in April. We caught up with most of Jeff's family there, the weather was nice and we did some fun things with the boys........Dallas has grown so much though since we lived there 13 yrs ago........it's crazy! I wouldn't want to live there again now......too much growth and too many people!!!
Over Memorial day weekend, we had some very special guests............Brian's donor Mark, and his wife Gina came to visit from Wisconsin. Since it was so close to Brian's 5 yr anniversary (6-11-99) from his second transplant, we decided to have a little celebration while they were here. We just invited some of the docs, nurses, and support staff from his time during transplant.......it was small, but nice. What a miracle that he made it to the "magic" 5 yr mark without a relapse! He wasn't even suppose to survive 3 yrs, let alone 8!! Our visit with Mark and Gina was a lot of fun and we look forward to seeing them again soon.
May and June were filled mostly with Eric's baseball once school was out and Brian's swimming lessons. Eric did well again this season, and even though his team was not on top of their division, he did well enough to be selected for All Star Tryouts again. He played in a round robin tournament where his all star team went 2-1. Today he is at try outs for next years select team..........if he makes it, it will be nice to have him hopefully playing with a whole team full of talented players, instead of just a few. If not, he will play with the same division he played with this year. Either way will be fine. He also will be playing fall ball again with the Strike Zone. This will hopefully keep him on track for next year.........this is all his choice......we support him either way. He also played tennis this summer.......it was his second year and he did really well with that too.....I was surprised! I figured someone with such a strong baseball background would try to hit tennis balls out of the "park" on the court, but he had a lot of control and has some nice strokes.
May also had me "stepping out of my box" trying something new. I went through two weekends of training to become a Body Pump instructor! If you have never heard of Body Pump, it is one of the fastest ways to get in shape.........it uses weight training and music (it's NOT a step class!!) to work your entire body in one hour and I love it. I never thought I would be an instructor in ANYTHING, but I really enjoy this and it is a great release from the stresses of every day life. Check it out sometime if you have any interest. The website has a gym locator to see if there is a class offered near you (www.bodypump.com ). No biggy though, I just wanted to share what I have been up to personally besides my job as mom and wife around here!! I am waiting to hear any day now if I am certified........hopefully I will be.
The last week in June was Brian's actual 5 yr oncology check up. Labs and exam were all fine. His donor DNA percentage is still 100 which is perfect! The only bad news came from a chest xray and echocardiogram that the oncologist scheduled as part of his 5 yr check up. Brian's heart was enlarged on xray (on the right side) and his echo (sonogram of the heart) showed right ventricular hypertrophy. The oncologist couldn't be certain what this meant, or how long Brian has had this, but he figured it was probably related to the lung damage Brian has from the chemotherapy from the first transplant. He said we should follow up with a cardiologist just to be certain of what we were dealing with. This news came only days before our planned trip to Colorado over the 4th of July, so follow up would have to wait til we got back.
July was our planned trip to Colorado for my mom's memorial. We also figured we would test Brian's lungs out while we were there to see if he might be ready for a move back. We arrived in Ft. Collins on the 3rd to help prepare for the memorial, and on the 4th, my brother Paul and my dad and I drove up to Loveland Pass to scatter my mom's ashes. It was a beautiful day and the wildflowers were all around. It was both emotional and liberating to be a part of that. It was carrying out her wishes, so that was important. The memorial was on the 5th of July and was also wonderful........very light and fun and a celebration of my mom's life........there was a brief time of reflection and memories shared that was pretty emotional, but overall, I think everyone had a nice time and agreed that mom would have approved and enjoyed it if she were with us in person. After the memorial we headed to Denver to visit with friends and start looking for a place to live, since Brian was doing so well. We ended up being in Colorado for 10 days and Brian's oxygen saturation level was within normal limits, so we made the decision to move back. We found a house and put a contract on it. We came home on the 13th and began the process of selling our home in Omaha. I made an appt for Brian to get his cardiologist appt. but they were booked for months, so I asked them to let me know if they had any cancellations. I figured if we could get in, great, but if not, we could follow up in Denver after we got there. They called me though that Fri (the 16th) and said Brian could get in the next Mon. The time wasn't really convenient, but I figured I would somehow make it work because we might not get another chance before we left........somehow, I knew in my gut that it was important to get in before we left.
Monday, July 19th will be now added to the list of dates that will never be forgotten. The visit with the cardiologist that day was a mental and emotional blow. It turns out that Brian has pulmonary hypertension (PAH, pulmonary arterial hypertension to be exact). This is a simplified name for a complex problem: high blood pressure in the lungs. It is rare. They feel it is most likely secondary to the lung damage Brian received from the chemotherapy during his transplant. What is happening now, is that this previous damage is making the small blood vessels that supply blood to the lungs constrict, or tighten up. This makes it more difficult for blood to get through to the lungs, which makes the heart pump harder. Over time, scarring of the blood vessels makes them stiffer and thicker, and some may become completely blocked. The extra stress causes the heart to enlarge and become less flexible. As this cycle continues, less and less blood is able to flow out of the heart, through the lungs, and into the body, and more and more symptoms begin to appear. Eventually, without treatment, the lungs will fail, and the heart will follow. The natural history of the disease is progressive and fatal. (Some of this explanation is taken directly from all the information we have been given......I thought it explained it pretty good, especially for anyone who is not medically inclinced)
Are you blown away now?????...................we sure were/are. There is no cure at this time for PAH. There are some medications that are used to try and slow the progression of this down, but it is thought that in time, Brian may need a lung transplant...................
Transplant?
Another transplant?
A different kind of transplant.
So, here we are left pondering Brian's future again. Heck, now we wonder about ALL of our futures. You never really know, do you? We were told when Brian was first diagnosed with leukemia, that everything they would do to try to save his life, might cause complications down the road. We knew those risks, but we thought we HAD to do whatever it took to save his life THEN, and worry about long term effects/complications IF we got there. Well, we are there now. Even though we knew this could happen, we are still blown away by the seriousness of it all and the many questions left unanswered.
The cardiologist wanted to schedule Brian for a heart catheterization to confirm the measurements of the valves in the heart. They did this on Tues (July 27th). They did it under sedation, and he did fine. The news however, was no better than what we had heard prior to the catheter......it was actually a little worse. The measurements taken with the echocardiogram showed a pressure in the right ventricle of 75......just to let you know, the normal measurement should be no greater than 25.......the heart cath showed it to actually be 85. This explains why the right side of Brian's heart is enlarged........it is working very hard to pump blood into the vessels of the lungs. They want to start Brian on oxygen again (night time only right now) and a medicine that has shown to be helpful in slowing down the progression of this disease. This medicine will help to open up the constricted blood vessels, which will allow the heart to pump blood more effectively. The new form of this medicine is in pill form and can be chewed up or mashed into food, so it will be fairly easy to take. The down side to this drug is that it is very toxic to the liver, so we will have to monitor Brian's liver function studies monthly to make sure he doesn't receive damage to the liver too. They hope to see some results in 4-8 wks of therapy (since Brian has not had any of the regular symptoms of this problem like difficulty breathing, feeling tired, dizzy, faint, having swollen ankles or legs or chest pain, they will probably just repeat his echocardiogram to take measurements of the valves again to see if the pressure is coming down). If this drug doesn't work, or if it is too toxic to his liver, they will have to try one of the other 3 choices.......one of them has not shown as much response, one of them is given twice a day subcutaneously and is supposedly quite painful, (he already gets poked once a day with his growth hormone shots) and the last one is given 24 hrs a day by IV, so he would need a central line again for that, tying him to an IV full time. So, what does all of this mean? Not sure. What we don't know is how long he needs to be on this medicine? If he shows improvement, will it keep him from getting to lung/heart failure in the future? or is it just temporary? How long are we talking about postponing this lung/heart failure, if that's what we are doing? is it enough time that a cure or newer drug will work even better? If transplant is eventually necessary, where is the best place? How long will it be until that is necessary? So many questions...........and not enough answers.
So, for now, we will just proceed with the drug they are recommending, oxygen at night, follow things closely, and hope that this works to keep Brian out of further trouble. Oh!! and, the cardiologist also told us that a move to the altitude in Colorado would be detrimental to Brian's health. He said he couldn't tell us NOT to move, but he could tell us that the altitude would speed up the progression of this disease. So, we cancelled our contract on the house in Colorado, hoping that the sellers would understand and return our earnest money. We cancelled the sale of our house here and we are staying put! It took several weeks, and a lot of work by the sellers real estate agent, but we just heard that they are releasing us from our contract and returning our earnest money. Actually, it blows me away, but we found out that the sellers were NOT going to give us the money back!! Their agent had to make a special deal with them to buy their house at our offer but only if they would release the earnest money.........reluctantly, they agreed. Can you believe it? It's not like we meant to do that. It's not like we just changed our minds or got cold feet or found a different house! It was all about the health of our child. Anyway, it turned out ok in the end, but there were a lot of hoops to jump through!
I think that gets us mostly caught up to date. We have a quick trip planned in August overnight to the Great Wolf Lodge (with indoor waterpark) in Kansas City; we have Brian's 8th birthday party scheduled at Putt Putt (his favorite place to go besides Borders or Learning Express!), and then school starts back up on Aug. 25th. The summer blew by this year, and fortunately, it hasn't been as horribly humid and hot as it usually is here in the midwest (yet). I hope that all of you have had a good summer, and look forward to hearing about you and your families when you have time to write. I should have new photos up on Brian's website soon from our trip and from Brian's visit to the Cancer Survivors Park on his 5 yr anniversary of being leukemia free. Check it out soon to see if I have gotten them downloaded.
I am sure that I have probably forgotten something, but it will just have to wait until the next update..........hopefully not as late as this one was! I also know that we will find a huge supply of support from you all as we once again head into the territory of health concerns with Brian, and I want to thank you in advance for that. You all have always been wonderful to us in the past, and it has been so nice to have had a break the past few years without major medical concerns. We don't know what the future holds, but we know we will handle it the way we have handled every other hurdle..........head on, one day at a time, one crisis at a time, and we will try even harder now to enjoy every single day we have with Brian.........some days are a struggle with his various needs, but we always know it could be worse, so we'll take advantage of that knowledge!
Take care and write when you can.
All the best,
Niki, Jeff, Eric and Brian
Thursday, February 12, 2004 3:14 PM CST
~~~~~~~~~UPDATE COMING SOON!!!~~~~~~~~~~
HAPPY VALENTINE'S DAY!! (almost)
Ok, I know, it has been three months since my last confession.....oops! I mean, since I updated on Brian and the rest of us.....to be honest, I always think I am going to do it sooner than I do, but usually I am waiting to have some new results or new photos, or testing or something before I write so I can include the latest.......but then, before I know it, all this time has gone by and I have put it off too long! Sorry! You know that means this is going to be several "chapters" long!
So, first is news on Brian (since this is supposed to be about him anyway!!) The last time I wrote we were struggling with Brian's feeding issues. That hasn't changed.....it's still a struggle, the meals are still no fun for him (unless you let him chat the meal away instead of actually EATING!!), the things that made him gag, still make him gag, etc. etc., however, we have made some new changes. His weight had gradually dropped from 42 lbs last summer after the feeding clinic in Va. to 36 lbs. We decided that we had to do more than just add more oil to his purees and milk, etc., so we gave in and went back to his feeding pump..........big sigh........for so long it felt like it meant some sort of failure on our part to have to go back to that, but since it was just one feed, and it was at bedtime, it didn't feel quite so bad. This allowed him to still take in what he could by mouth during the day, but get that extra supplementation at night without too much trouble. We felt much better about this after he quickly gained 3 of those lost pounds. In the meantime, he also saw the new GI doc who recommended a scope be done since the last had been Oct of 2002. This was done in January and it went well. They took biopsies of his gut and they came back negative......the good news was that all his pain, discomfort and complaints were not coming from any allergic reactions to what he was eating. The other findings that leave us all asking more questions is an abnormality in his distal esophogus. In the past he has had strictures there. closing off the esophogus.......this time there were no strictures, but there is this "sprialing" of the distal esophogus.....it's hard to explain, and they don't know if it is the cause of his problems, but they want to do a swallow study with a specialist to see if they can determine this. It might be sort of "twisted" from the Nissen he had so many years ago.......I wondered how this could be, since it has been so long, but they said as he grows, the wrap might be twisting things a little as he continues to grow. Anyway, lots of phone calls later and we FINALLY have the swallow study scheduled for next Tuesday the 17th. Hopefully we will have more answers than questions again, but we will just have to see. A few days ago, we decided to give the stressful breakfast hour a break and put Brian back on the feeding pump at this time as well. We don't want to make this a long term thing, we just want to relieve some of the meal time stress from all of our lives and give him a little more in the way of supplementation for awhile. I want to see if he will gain back some more of the lost weight and then perhaps go back to eating breakfast by mouth. Who knows? maybe he will even want to eat something by mouth like the rest of us......(that is hopeful thinking considering that this morning, when I told him I needed to hook him up to his pump he said, "I don't want my pump!".....so I said, "ok, well then, what do you want to EAT for breakfast?", and then he quickly replied, "oh, ok, I'll have my pump then!").
As for the endocrine issues, he had a follow up weight and height check......he has grown 1 1/4 " since we began the growth hormone shots in Oct. He has another check up in March along with labs to check his IGF-1 level. It would be nice to see even more growth, but considering all the problems with his nutrition, it might be slower than with kids who eat normally. We will just have to wait and see. School is still going good for him. He is doing really well. He is also continuing to progress in the "Pedals" program......he can ride without training wheels by himself while the therapist holds onto a strap around his waist.......he actually controls the bike pretty well, but has sort of forgotten how to stop and put his feet down when he is about to fall.......but she says this is normal. I'm impressed with how well this program helps kids like Brian succeed. He still lives for every Sunday night when AFV (America's funniest videos) comes on........if you ask him what he wants to be when he grows up, he says he wants to be "the AFV guy"!! One of these days I should actually videotape him watching the show because he copies every last thing Tom Bergeron (the host) says and does! Who knows? maybe it would win us $10,000!! It's so funny for us to just watch Brian as he watches the show! He still runs around pretending to fall and then says, "did you see my AFV?" (meaning anything funny or stupid that could be on the show).....sometimes he gets a little carried away and when I look up to see if he hurt himself he says, "I'm ok, Mom!" What a goofball!
Ok, the rest of us.....Eric, as usual, is doing great. He's had a lot more colds this fall/winter than it seems he's had in the past, but otherwise doing ok. He had a nice birthday (Jan 4th) and party with four of his friends......they went to a local hockey game and had a sleepover. His orthodontia is doing great......the palate expander worked great to move the teeth around and allowed his permanent teeth to come in......his upper teeth look very straight and very nice now, and he gets to have the expander removed April 1st. He is looking forward to that so he can go back to having popcorn and bubble gum again! The bottom 4 teeth will probably still need to have some braces, but the orthodontist is not in a hurry and said we have plenty of time to watch and see how that goes. Baseball signup is this wkd and play will start in April. I know he is looking forward to that. His American sign language class is going well and he is practically a pro......I am impressed with how easily he has picked it up and can rattle things off without even thinking about it!
Jeff's knee surgery went well and he has recovered to almost 100Nothing really new to report about me.......our trip at Thanksgiving to Florida was great!! The weather couldn't have been nicer (especially considering it was cold and snowy here at that time!) and we had a really nice visit with my sister and her family. The boys loved their new cousin Sara, and had a great time at Disney, Animal Kingdom and Sea World. Jeff and Jamie (my brother in law) and Eric and Brian all went jet skiing on Thanksgiving day too and had a ball! Eric and Brian were a little nervous about it at first, but had a blast once they got used to it! I posted a few pics on the website from our trip. It is so miserably cold and snowy here right now that it would be really nice to be back there again!!
Well, I guess that just about wraps things up. The only other news from me is about my Dad. He recently went through some testing on his heart to see if he was healthy enough to possibly undergo knee replacements. It turns out that he had two arteries that were 90locked!! He also had some sort of problem with his mitral valve. They did lots more testing and felt that he should have a double bypass done. It was scheduled for yesterday and I am happy to report that he is doing quite well. Initially, they couldn't get him off the ventilator because his blood pressure kept dropping, but finally last night, they extubated him and today they took out both chest tubes and the arterial lines. He is a little drugged up, but I actually talked to him and he sounds pretty good. He said he isn't near as sore as he expected he would be......his chest bone is a little sore, and he still feels some occasional nausea, but otherwise feels good. The nurse told me that he is ready to leave the ICU but the cardiac unit doesn't have a bed yet, so he will remain in ICU til they do. I was really nervous about this procedure and the huge risks involved, but am glad that all went well and that it's over. It is just so close to my mom's passing, I didn't want to lose my dad too. I'm so grateful that all went well and hope that his recovery over the next few months will also go well. I am planning to make a quick turnaround trip once he is home just so I can see him and offer whatever help I can. It's hard to be so far away with all my responsibilities here, but I know that at least he is not alone and is getting good care from everyone there. I guess it's pretty miraculous that he didn't end up having a stroke or heart attack in the last year........that would have been horrible considering all that was going on with my mom.......I guess someone was looking out for him during that time so he could keep looking out for my mom.........it allowed him to give her all his attention and love and care.......just where it should have been.
I am also sad to report that 4 more of my JMML families have lost their children to the same horrible leukemia that Brian had. It has been a difficult year......there have been 9 kids in the past 6-9 mos or so.......it's just not fair. I will never really understand why they all have to go through this, but the children have all taught us so much about courage, strength and about living life to it's fullest. They have all lived more in their short lives than most of us live in a normal lifetime. My heart aches though for all the parents and families affected by this. We were so lucky to be spared that loss, but it doesn't mean I don't feel THEIR loss........I still offer up Brian's experience and survival to all those looking for hope because he proves it CAN happen.....I just wish it could happen for all of them. Sometimes it's hard for me to sit down and write his updates because I wonder if it makes it more difficult for those who have lost their children to read about Brian and all his progress. I also hope that as I vent all our struggles and difficulties with his complications, that it never appears as if we aren't appreciative to at least have him here with us. We ARE grateful to have him here, but the long term effects of survival still create their own stressors. We just deal with them......as we always have, and always will. It's just part of life. I still hope and pray every day for all those still struggling in their battles. I never give up hope......Brian has taught me that.
So now, I close, finally......I hope that all is well in your world. We love hearing from you, so keep in touch with us when you can. Until next time..............
All the best to you,
Niki
Thursday, November 20, 2003 3:01 PM CST
2/12/04 NEW UPDATE COMING SOON!! SORRY TO BE SO DELAYED! ~ Niki
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
DRUM ROLL PLEASE........FINALLY, IT IS HERE!! A NEW UPDATE!!
Hello everyone!
I've been trying to write for weeks. It hasn't been easy. I've had very little time online to do anything more than check email or write quick replies. When I have had the time to write, I haven't had the right frame of mind to write. I'm not sure that my frame of mind is any better now, so you may be getting this update "unplugged" and "raw"! It may be more than you have been asking for......so be forewarned!
The last few months have been an emotional roller coaster. It began with the summer spent in Virginia for Brian's feeding clinic. That was an intense 7 wk period, and although we had great success there, when we got home, it just left me feeling behind on everything! Brian continues to eat completely by mouth, but every day and every meal is a struggle! He just doesn't like to eat.....he doesn't "get it"......he may have the skills now to bite, chew, move food around in his mouth and swallow, but he has no desire to eat and does not "crave" food like the majority of us. It's not an enjoyable experience for him......it's just "work". Can you even imagine? I work so hard to find foods that he likes, that he's not allergic to and that can be pureed easily......he eats many of them in their natural form, to get practice chewing and eating them as they are, and then I boost them with oil for additional calories and puree them so that he can get more volume in. It doesn't really matter what we do or how we fix things.....he still has no real interest, and dawdles and procrastinates every bite and drink. He finally gets it done, but not without constant prompting from us with EVERY bite and EVERY sip. It has become a very negative and unpleasant environment for us all and I am totally stressed out over it. I have contacted his feeding team in Virginia to see if we can find a new approach......they are discussing their thoughts and want us to video tape Brian over a few meals so they can see what he is doing. I can't imagine what they can say that will make a child who has never eaten naturally from day one, suddenly like and want to eat, but I will wait to hear. I am about to give up, but I know that is not an option. I just don't want to have to deal with feeds the way we have been anymore.
The past 5-6 months have also seen the loss of 5 children from my JMML family, as well as several relapses. This disease is horrid and doesn't seem to be getting any easier to beat or cure........it amazes me that there are any that HAVE survived.......Brian being one of them. How does that work? how do some survive and others don't? It makes me both grateful for our blessings, as well as heartbroken for my friends who have had losses. We are a small family in this rare leukemia, but we become pretty close as we reach out to one another in support. It hurts deeply each time there is news of another child who has been diagnosed, who has relapsed or who has lost their battle. It has weighed heavily on my heart these past months..............
..........and then there is my own mom's battle............another cancer without a cure; only various treatments to extend life for awhile until the next relapse........her myeloma was too aggressive though to give her many chances........she was diagnosed 2 yrs ago but the disease was in a "dormant" stage.....within 6 mos, it progressed to a stage that required treatment and she began 4 rounds of chemotherapy to try and put the myeloma into a temporary remission......this brought her to one yr ago when she had a bone marrow transplant with her own stem cells. We thought this was a major key to giving her a good six yrs of remission before relapse occurred, but we were so wrong.......it was six months before it reared its ugly head again, and a new treatment plan was started. She endured a lot in the next six months......a lot of pain, discomfort, and dealing with multiple side effects of the treatment, but through it all, she remained optimistic that she would get through this thing in order to hang around longer.........unfortunately though, the myeloma spread rapidly, despite all her strength and optimism, and won. She left us on September 30th............it has been 7 wks..........sometimes I still can't believe it really happened. The void that is left inside of me is far greater than I can even express. I experience some pretty low moments at times, but I think overall I am ok. I worried about my Dad initially, but I am seeing and hearing a new strength and independance in him that makes me realize that he is going to be ok. It's as if everything she was to him, and everything she did for him, has been transferred into him, and he is carrying on for both of them in her absence. I am so proud, and I know she would be too. He has done a great job of taking the time to grieve and reflect and mourn and take care of himself........I envy that time he has had to do that. It is extremely difficult to do that for myself with all the responsibilities I have to my kids and my family. Even though I know how important and necessary it is for me to heal, it is extremely hard to give that to myself and not feel like I am taking things away from my family.........I will just have to make some kind of compromise, otherwise, all of these events of the past 6 months will eventually wear me down. That can't be good for anybody. When they come at you, one at a time, they seem so easy to handle........until enough time goes by and you look back and realize that they are MANY now and that you haven't really handled ANY of them, and then it seems like a mountain instead of an ant hill........that's where I am now........looking at all these little "ant hills" that have piled up on top of each other into one big mountain, leaving me feeling overwhelmed with it all, and not sure how to go about clearing it! I know I HAVE to move forward, but my feet are currently stuck, not sure which way to go first! In fact, this update is one of the "ant hills" that I am trying to move off the top of the mountain, so at least I am trying to clear it, even if it IS only one little step at a time, and not in record time! Here is my attempt:
At last writing, we were dealing with Brian's endocrine issues......specifically, growth.....or lack of it! He had a bone age xray and some lab work to determine whether his growth hormones were deficient. The results came back showing his bone age to be that of a 4.5 yr old (at age 7 ), and his labs on the IGF-1 were 57 (normal range is 88-474). It was determined at this point that Brian should begin growth hormone shots. We began this about 7 wks ago. He gets injected with Humatrope every night........this will go on for YEARS! The average growth rate is about 4 inches per year, and we should see evidence of change and growth pretty quickly, like within 3 months. Jeff gets all the credit for taking care of this job......I did it once and it just about killed me!! If I ever have to do it, I will, but for now, Jeff is doing it and doing a great job! He and Brian have their routine where Brian gets his emla cream (numbing cream) put on the area that will be injected, and then an hour later, he gets his "pokes". I know he doesn't like it, but just like everything else he has ever had to do, he is a real champ about it! He lays down for it, doesn't really complain or try to get away or get out of it, he just does it, and then hops right up to get his bandaid.......picking out the bandaid for that night is a big deal to him too. He has it all planned out what kind he will have for what night! I tell you what, will all of the complaints I may have about Brian, there is certainly no lack of respect for him. I am in awe (sp?) of him and am proud of what a trooper he is with all he must go through. His poor thighs and hips though.........they are covered in bruises from all the shots, poor kid! But he doesn't complain about it at all.
He is doing really well in school this year. His first week of school, he shocked us when he came home with his first ever spelling test and he not only passed it, but he passed the challenge words too! I've said before that we probably have not had high enough expectations of him because of all he has been through and all of his delays. He continues to prove us wrong and makes us have to consciously raise the bar with him to try and treat him like any other kid, more or less! Any difficulties he has in school are immediately supported and taken care of by his school support.......the staff and teachers and therapists, etc. constantly rally around him to get him what he needs to make any difficulties easier. I went to his IEP (individualized education plan) today to find out what goals he has met since last years meeting, and to set new goals for this year. I found out that Brian does not just have a great support system through all his caregivers at the school, but also from his classmates!! They all love him and help him and encourage and support him any time he struggles with something. For instance, lately he has been having trouble eating all his lunch and milk at lunchtime. When they all saw that, they began to cheer him on with every bite and drink......really encourage him to finish quickly, so that he could go out to recess with them. He apparently loves this "challenge" and attention, and since they started doing this, he has not only finished both food and drink, but is doing so in less time than some of THEM! My heart smiled when I heard this and I wanted to cry! Maybe I am wrong, but I just didn't think that this was a normal thing for kids this age. I am afraid that outside of this special school that he goes to (it's a standard elementary school, but small in size and has lots of special needs kids mixed in), he would typically be made fun of or excluded because of all his differences. These kids are really special.........they love him and INclude him and watch over him. They never make fun of him and I am so grateful for what they are doing to help him. It just warms my heart!
Everything else with him is going ok. He is taking a special class every week to teach him how to ride a bike without training wheels. It is designed for special needs kids who aren't able to learn the way most kids do because of muscle weakness, imbalance, etc. and it is really helping him. We have already moved him up in size of bikes, and he practices without any pedals or training wheels on the smaller bike where he can reach the ground if he starts to fall. He loves this class and can't wait to go every week! He is now into doing word search books and dot to dots, and his favorite show (I'm not sure why!) is AFV (America's funniest videos)! I think he loves to see all the silly/stupid things people do that make them fall or embarrass themselves or something. We can't really figure it out........he just cracks up! But not in a way that he is making fun of them......he'll just say things like "Oh, that's gotta hurt!", or "now that wasn't too smart!".......maybe it's just humor in general that he likes.....he's always been comical himself, can laugh at himself, and just likes to laugh, so go figure. Whatever it is, it makes him happy. He even "replays" some of the things he sees a little or he will pretend to fall on the floor and say "I just did an AFV!" Or he will be talking to himself while he colors and act as the host of the show, "if you can get it on tape, you can get it in cash!" Pretty weird kid, but funny. Keeps us laughing, that's for sure!
As to the rest of us? Eric is still doing great. He likes 3rd grade and has been selected to challenge reading, writing and math. He played fall baseball since we were gone this summer and did well again with that. He has also signed up for the after school foreign language classes. He took Spanish in previous years, but this year he asked to do sign language. I think he had a real interest in it because of the 3-4 yrs we had to use sign language with Brian. Let me tell you, I am so impressed with him and this class!! He has only had 3-4 wks of class (every Thurs afternoon for 45 min.) and he is very good and fast already! I just think this is so cool that he is doing this. I hope he continues, because I think it would be a very useful skill to have throughout his life. I have a very good friend whose son is deaf, and it would be really cool if Eric could use these skills with him.
He also has had to begin orthodontia this fall because his upper palate was growing inward causing crowding of his teeth. The crowding was not allowing some of his permanant teeth to come in, so he had to have a palate expander put in. It's not a huge deal, it's pretty simple, and it has worked really well! He is supposed to wear it for about 7-9 months and then they will remove it. Depending on how all the new teeth eventually come in, he may or may not need braces on his four upper front teeth. This orthodontist is very conservative and likes to watch and wait before jumping in with work. This is all he felt was necessary for now.
Jeff and I are hanging in there. He was, and is, an enormous support to me with the loss of my mom. He has been there for me as I have grieved over the loss of all the JMML kids these past months. I sometimes wonder how I can ever "repay" him for this support, but I know I can't........not really. I just try to be there for him with whatever his needs are too. Hopefully I can help somewhat in a few weeks after he goes in for arthroscopic surgery on his knee. He's got a torn medial meniscus (ligament) and a popliteal cyst behind his knee cap. It shouldn't be too big of a deal, but whatever he needs, I will be there for him. But first, before he has surgery, we are all going away on a REAL vacation!! We have taken trips before to visit family, and of course, we spent 7 wks in Virginia this summer at the feeding clinic, but I am talking about VACATION here.........this is our reward for the long grueling summer at the feeding clinic......WE'RE GOING TO DISNEYWORLD!! Actually, we are going to visit my sister in Orlando. Eric and I went to visit her and her husband right before they got married and right before Brian's second transplant, so it has been over four years since I have seen her. She has since had a beautiful little girl named Sara, who just turned 1, and Brian has recovered enough to make a trip like this. They have never met Brian either, so it should be fun for all! We do intend to do a day at Disney, Epcot and Sea World while we are there. Weather and time permitting, we might go to the beach too. We will spend the thanksgiving holiday with them too. This trip is just on our own though.......it is not Brian's make a wish yet. We still want to wait until he can understand what that is, what it is for and then make his OWN decision about what he wants. Anyway, we are looking forward to it, and it looks like it is perfect timing weather wise too.......we are about to get a cold snap and possible snow here, while it is supposed to be high 70's in Florida!! Yea!
I have added the boys school photos and one from Halloween on the photo page. I will add vacation pictures after we get back too and try to send out a quick note about the trip. I am sorry it has taken so long, once again, to get this out to you, but I hope you can forgive me. I am doing the best I can under the circumstances, but I do appreciate all the notes of support you send to us along the way. I also still enjoy hearing what you all have been up to too, so keep in touch. I hope that this upcoming holiday finds you all happy and healthy and loved. Even though you all don't know my JMML "family" who have lost their kids or who still have sick kids, please send a cyber thought or prayer out to them. I believe that whether they hear it or not, it can't hurt!
All the best to you and yours,
Warmly,
Niki
Sunday, August 24, 2003 11:09 PM CDT
~~~~~NEW UPDATE COMING SOON!! HANG IN THERE WITH ME! ~~~~~~~
**********NEW PHOTOS ADDED TOO!********
It was 12:05 a.m.........7 yrs ago today........our family of three became four........we thought our family was now complete and all of our dreams had come true.......we knew another child would change our lives.........we had NO IDEA that he would come to us with so many problems or that he would be born with such a rare and fatal disease.........BOY DID OUR LIVES CHANGE!! We were told his life expectancy was 9 mos...........well, I guess somebody forgot to tell Brian that!! He had other plans, thank goodness, so here we are 7 yrs later celebrating with Brians very first birthday party!! He had a few of the kids in the neighborhood over for bingo and pin the tail on "Blue", then opening gifts and then cake and ice cream.......which he didn't eat because of milk allergies BUT, he did have some apple cinnamon muffin made with rice milk........which brings me to the news of Brians summer feeding clinic.........
I know I wrote a couple of updates on Brians webpage while we were gone, but I'm not sure how many of you were able to check in there, so this may be a repeat for some of you. As you know, Brian has been tube fed his entire life. Eating by mouth has never been a part of his normal routine. He was born with feeding difficulties and his transplants and treatments over the years have only complicated things, however, we finally got him to a place where it was time to "train" him/teach him to eat like the rest of us. We found this special feeding clinic in Richmond, Va. that concentrated on both oral motor and behavioral aspects to feeding problems. Their program offers several options for help depending on your needs. Brians needs were pretty extensive and he began the intensive day program. This involves 4 feeds a day, five days a week, for 7-8 wks. We knew of their success rate, but we found it hard to believe that Brian would really be biting, chewing and swallowing solid food. He had gotten to a point where he would swallow purees like baby food, but nothing with any texture and certainly nothing hard or solid and crunchy. I won't bore you with all the details, but this clinic uses lots of reinforcers to help the kids learn new things. For Brian they used charts, stickers, calendars, videos, games/toys. He was so eager to please and loved all the attention he got from them. They made it so much fun that he didn't seem to mind too much all the hard work he was having to do every day.......and it was HARD work for him. He tried things he didn't like, he did things he didn't want to do, he went to feed after feed even though he was still stuffed from the feed before........he would complain or fuss and we would say, "sorry, we know it's hard, but you have to do this", and then he would reluctantly say, "oooo-kaaaaaay". Within two days of starting the clinic, he was off of his feeding pump and formula during the day. We had to supplement a few times at night to make up for any calories he didn't get during the day, but eventually we didn't even need to do that. As of June 22, Brian has not had to use the pump or formula AT ALL!!! We only used his g-tube for all his meds, but now he is beginning to even take some of those by mouth too! The most incredible news is that Brian actually eats solids now......chips, pretzels, crackers, vegie sticks, bananas, etc. When we left the clinic, the majority of his food had to be pureed.....all real food, but it had to be blended.It also needed to be "boosted", meaning I had to add FAT to his food to add more calories.....now he is taking in more like 50-75olids (food in it's natural form) and 25-50lenderized. It's a challenge for me, no matter what he eats because of all his allergies, but I keep trying new things trying to find things he likes and can eat easily. The easiest thing for him to eat is soy yogurt, but he can't live on that alone, so I challenge him every day with things like soy nut butter and jelly sandwhiches, steamed carrots/vegies, pieces of chicken, cereal with milk, bread/muffins, peices of waffle, crackers, bananas, fruit, etc. He is doing really well with chewing all of these things but the problem is that it TAKES HIM SO DARN LONG to chew and swallow them he can't get enough volume in to meet his calorie needs in the recommended amount of time for a meal time. It's very frustrating for us as we always have a million other things that need to be done and we can't LIVE in the kitchen and have 1 hr meal times!! He also has to be able to eat his lunch at school in a short amount of time with little prompting and that is still really tough! But, like everything else, we will keep on working with him til he gets it! When I get really frustrated with things I just have to remember that 2 1/2 months ago, he wasn't eating at all, so even though some of this is slow, it's at least progress!! The whole feeding clinic experience was very positive. It was hard on us being separated as a family and being so far from home, but the staff was great and we met some really awesome families who were also traveling down a similar path as us. I met some awesome moms who have also since graduated from the program and we are staying connected online. We can laugh and cry about our experiences, difficulties, successes and know exactly what the others are talking about. Right now we all vent about being so tied down to the kitchen and the blender.......it seems like it's always time to do a "feed" or puree up some more "slop" for our special needs kids, and of course not forgetting the rest of our families meals too! So, we have named ourselves the "Blender Brigade" and we swap war stories about our kitchen/blender/food/feeding experiences. Hopefully, one day we will be past this period of our lives and perhaps go back to using the blender for it's other general purposes (like maybe smoothies or margaritas!!?). Anyway, all in all, the feeding clinic was worth all the hard work and we would highly recommend it to anyone who has these sorts of needs.
It's interesting how many other things changed for Brian while he was at the feeding clinic. He seems to be growing up before our eyes........before we got to the program, Brian was terrified of swimming pools. He didn't want to get in, even with us holding him, he didn't want to be anywhere near it! Halfway into the program, he decided he wanted to first sit on the edge and kick his feet in the water. Then he wanted to sit on the first stair in the water......this eventually grew to him becoming a pool fish!! He now loves the pool and has no fear at all about swimming! We think that part of this change is related to some of his oral motor/sensory integration improvements. All of the facial exercises they had us doing at the clinic must really help with these things a lot! His other big step is that he no longer has to sit down to go potty........he stands up like the "big boys" now and he thinks he is pretty cool!! (it has never been easy for him being so short, but he finally has it mastered even with his short stature).
As far as Brians leukemia goes, he has now passed his 4 yr mark in remission (June 11th). When we got home from our trip, he had a visit with the rheumatologist who feels his osteoporosis is better now and he is able to come off the vit D and calcium meds. He also had another height and weight check with the endocrinologist (he has grown 1" and 2 lbs since his last check 6 mos ago) who recommended that Brian get another bone age xray and IGF labs to check his growth values. He had both done, but the doc has been out of town so we don't know yet what those tests show. Brian still goes through a fair amount of gagging at times and complains of pain sometimes mid sternum when he eats, so we wanted to make sure his esophogus had not closed off again (esophogeal strictures) and he had an esophogram/barium swallow done this week. Preliminary report from the radiologist doing the study said all looked well. So, now, about Brians lungs........?
We decided to test his lungs after a three year break from the altitude in Colorado. Most of you know, but to those that don't, we had to move from our home in Colorado because the lung damage Brian got from his chemo/transplant meant that he required oxygen full time as long as we remained at that altitude. When he went lower, he was able to go without it, so we moved to give him a better quality of life. The move did wonders for him and his development, but we always wondered if he might be able to go back someday. This summer, we decided to see how he would do. We have a pulse ox machine (tests his oxygen saturation level) and we got an oxygen tank and we started our trip back home. We stopped along the way as we increased our altitude to check Brians sats. He started out around 97-98 here at home (about 1200 ft), was 95-96 at 3500 ft......he dipped down a bit at 4700 ft, but we were almost to Ft. Collins
(5003 ft) so we decided to keep on going and check him again when we arrived (afterall, even if his sats were lower, we had oxygen)......his sats were up around 95-96 again and we were so happily surprised!! Yea!!! Maybe this meant we would try to move back home again! It was a whirlwind trip.....mostly trying to see my family (especially my mom since she is undergoing treatment again for her myeloma).......we also spent several days trying to look at real estate so that we could get an idea of what things would cost to move back. After 4 days, things took a turn.......Brian started to "poop out". His night time sats were hovering around 93 (low normal) and one morning he said to us (without any prompting from us), "I'm having a hard time getting a breath".......GULP!!! We looked at each other and swallowed hard! We hooked him up to the pulse ox machine again and although his sats were still around 95, his heart rate had gone up A LOT (like to 120), so it was evident that his heart was having to work really hard to keep his lungs oxygenated. That called for some really serious reconsidering about a move back. I think the last two nights we were there pretty much answered it for us as his sats were now anywhere from 88-90 while he slept and we had to use some blow by oxygen to keep his levels higher. It was disappointing.....especially for me, but he just isn't quite ready yet for the Rocky Mountains full time! There is no way we want to go back to a life full of pulmonary problems, carting O2 tanks around, etc., and we especially don't want to put Brian through that.........he would be tethered down again and wouldn't have the freedoms that he has now to run and play, etc. So, although a visit now and then is not out of the question, a move back, is. We will just have to find another place to call home. I'm convinced that things happen for a reason, and that there is somewhere out there that is just meant to be for us, more than Colorado. Our research continues..........
I think that brings me closer to the end of this long update........briefly about the rest of us; Eric starts the fall baseball league (since he missed the summer season) next weekend. School starts for the kids on Wed the 27th....Eric is off to 3rd grade and Brian to 1st. Although I am not lacking for things to do, I do look forward to having some time to myself again. I still have quite a bit of catching up to do around here after having been gone for 2 1/2 mos this summer, and I will get more serious about studying for my personal trainer certification. It's just been impossible to study with everything else going on this summer! Jeff is doing fine too and is back to work after our trip back from Virginia and trip to Colorado. He has a huge list of projects to do around the house too, so there's no lack of things to do for him either! My mom and dad are hanging in there with the turn of events in their lives. My mom started radiation therapy about 10 days ago to try to shrink the tumor in her abdomen/pelvis, however, they had to put that on hold a few days ago as her white count dropped to 2000 and her platelets down to 53, 000. The cutoff for radiation is 55,000 so she'll have to wait til it is higher. They stopped her thalidomide for now too to see if a break would help to bring her counts back up and perhaps stop the nerve pain she is experiencing. Tomorrow she will have some more labs and if things aren't coming up enough on their own, she will need some transfusions. She has a total of 25 radiation treatments to complete, so she is not even halfway done yet. The good news is that one of the lab values done last week showed her M-protein (?)was normal, which tells them that perhaps her myeloma is no longer "active".......maybe that means the thalidomide, steroids and radiation are doing their thing! She will have an MRI next week to see if the tumor is indeed shrinking. Keeping my fingers crossed that this is the case and that she may be on her way to another remission..........this one hopefully longer lasting than the last!!
All your kind words and support and prayers for my mom in the past, have been very much appreciated!
So, that's it, I think! I'm sorry it took so long to get this done. It's just so time consuming......it's one thing to sit at the computer and read my mail or send off a quick response to someone, but writing the updates (especially after such a long and productive summer!) requires more thought and time (and preferrably NO interruptions!). Hopefully now that we are home and beginning to get back into a more "normal" routine, I can update sooner. I want to thank everyone who stayed in touch with us/me while we were gone......it was so good to stay connected while we were so far away.
I want to leave you with some Brian humor from this summer. Brian is very vocal about things and has no clue yet about when it's appropriate to say things and when NOT to say things. There were two incidents with him while we were staying at the hotel in Richmond. The first one was one day as we were leaving our room when a teenage boy came walking up behind us.......Brian turned around to look at him and then LOUDLY laughed and said, "Mommy, why does that boy have CRAZY hair?" I turned around to see what he was talking about and YES INDEED, this boy had some "crazy hair"......long, black, spiked straight out in all directions, as well as some pretty funky clothing (black leather spiked "dog collar" too!).......I was a little embarassed but I just told him that that's just how some people wore their hair........the kid smiled and Brian just laughed and said again that he thought it was pretty crazy!! Another day when we were coming in from the pool, he saw a man going out to the pool who had a pretty big "beer" belly........now Brian had been saying at the feeding clinic every day after every feed, how full he was and would show us how big his belly had gotten from all the food! So, when he saw this man and HIS big belly, he just associated the two together and said, "Ha ha ha ha, Mommy, did you see that man? he must be pretty full cuz he had a big fat tummy!!"..........Oh MAN!! Thank goodness the man didn't hear this.....I don't know WHAT I would have said to that one!! I've tried to tell him now that when he is talking about other people, it's probably better to do so quietly and not in front of them, so as not to hurt anyone's feelings and such.......AND so as not to embarass MOM!!! Gosh!! The other cute thing he said this summer shows just how much traveling we did........while we were in Colorado, we were visiting some friends and Jeff and Brian had to make a trip to the bathroom at our friends house. After Brian washed his hands he started looking all around the bathroom for something......Jeff asked him what he was looking for and he said, "where is the hand dryer in this place?" !!!! You think he spent too much time in gas station bathrooms???? Hee hee......well, that's it......just a few out takes of the typical humor we deal with on a daily basis with Brian. It's probably a good thing too.......it's probably what keeps us from going crazy when things get too stressful! He always keeps us laughing.......it's good medicine! Hope it brought you a chuckle or two, too!
Thanks for listening........we send our best to you all and enjoy staying in touch! Take care til next time!
Niki, Jeff, Eric and Brian
Tuesday, July 15, 2003 10:24 AM CDT
****** 8/16/03-NOTE-NEW PHOTOS DOWNLOADED TO PHOTO PAGE--UPDATE COMING SOON!! THANKS FOR BEING PATIENT!~NIKI *******
Hello all,
We are finally into Brians final week of the feeding clinic. The time has gone pretty fast. He has made wonderful progress and we have met all the realistic goals we set upon beginning this program. The fantasy goals I had, of course have not happened, but I knew that going in...it would take some kind of miracle for those, but I will take what we have! As with everything else we have ever been through with Brian, it's one day at a time. Nothing ever comes easily or without a lot of patience!
Jeff arrived this past weekend to reunite with us for the final week of clinic and is with Brian even as I type this. He is getting his "training" in feeding Brian and doing his facial exercises, etc. Even though I will still be the primary feeder, etc., it's good for him to get first hand training for the times I am not available. Brian has made such progress in the time that Jeff has been away, he almost didn't recognize him as the same kid! The first night Jeff was here, we went out to eat and Brian proceeded to eat a bag of vegie sticks, some bread, and even a french fry! Jeff's mouth fell open in shock! It's been a long haul for Brian, and he has worked very hard to get to this point, but it seems that all that hard work finally paid off and the chewing and shifting of food in his mouth and swallowing just finally clicked for him this past weekend! His therapist decided to try him yesterday on french fries and chicken nuggets from Wendy's. He had no problem with the french fry but took three small bites of chicken and did pretty good. The chicken takes a bit more chewing than other things, and Brian still doesn't have the concept down of what to do with partially chewed foods mixed with still unchewed foods in his mouth at the same time.....it was confusing to him....he wanted to swallow the smaller chewed up bits of chicken, but didn't want to swallow the bigger unchewed bits of chicken. That will take time, but he still did pretty good. He still has not had to use his feeding pump or formula in over a month now and has even mastered taking two of his six meds by mouth. We will add a third next week, but we are also going to change his liquid meds at some point to either chewables or crushable tablets so he can either just take them by chewing them and swallowing, or take them mixed in his soy yogurt or something. Then we won't even need the tube for meds! I'm not sure how long it would take before his GI doc would want to remove the button, but I bet maybe if he goes for 6 mos? without needing it, he might be able to have it removed. It's exciting to think he might finally have the final "apparatus" removed soon.
Brian has also progressed in other areas. Before this trip, and even DURING this trip, he has been very fearful of the pool. We forced him to go in with us at the beginning of the trip and he had his arms and legs wrapped around us as tight as could be, all the while screaming in our ears!! We finally decided he just wasn't ready, and decided not to push it. Two weeks ago, he just decided to sit on the edge of the pool and put his feet in to splash (before he would go NO WHERE near the pool). When his shorts were getting wet, I told him that if he had on his swimsuit, it wouldn't matter so much. So, he decided to change his clothes. I wasn't going to push him, but after sitting and splashing on the edge of the pool, he said he wanted to sit on the first step in the pool. So, slowly, he began to get in, more and more. Next thing I know, he was standing in the 3 ft holding onto the edge, bouncing up and down and said he was ready to go out into the pool with me!! Off we went and he wasn't even holding on for dear life! Now he will go in at the steps by himself and play near the steps, and will even sit on the edge and "jump in" for you to catch him!! What a difference!! That was another big change for daddy to see! It's exciting to see all these changes in our little boy. Looks like this was a good decision for Brian to make this trip. Now our next big test is our trip to Colorado at the end of July. Keep your fingers crossed that his lungs have recovered enough from the chemo damage to be able to handle the altitude so we might be able to move back home.
Eric, Brian and I had a wonderful holiday over the fourth of July. We had the opportunity to meet one of our fellow JMML families, the Coles. They drove down from PA. to Virginia Beach and got a hotel right on the ocean. We drove to meet them at the beach and spent the 4th with them before heading back to Richmond on the 5th. Our time was too short though, and we definitely missed the physical presence of their son Colby (who passed away 1 month ago). Meeting Jack and Laura and their younger son Cameron was so incredible, but seemed more like just seeing good friends again after a long separation. It was as if we had always known each other and our bond was only strengthened by being together in person as opposed to via phone or email. They are incredible people and so giving, patient and kind. I know they must have their times of pain and loss, but they were so gracious to us and gave so much of themselves to us. I foolishly thought that we might be able to "be there" for them during their difficult time, and left feeling like all we did was "take"! That's the kind of people they are. It was an experience I will never forget and I look forward to when we can all get together again, especially with Jeff. I know he will love them as much as we do! Our time there was a lot of fun for the boys. It was Eric's second time at the ocean, but Brians first. He loved it! We collected some small shells, walked the boardwalk and went to the carnival where the boys played games. We had a wonderful dinner along the boardwalk and finished off the night watching fireworks right off our 7th floor balcony. The fireworks were set off from a barge out in the ocean. Before they began, they were located just in front of the hotel next to us. Right before they started though, the barge moved down to stop right in front of OUR hotel! We had a straight on view! We all decided it was little Angel Colby's doing.....he moved them down for us to see the best display ever!! All in all, the trip was great and it gave us all an experience we will not forget! Thanks again to the Coles for their part in a great holiday weekend!
One more bit of news.....I have written in the past about my mom and her battle with multiple myeloma. Last summer she went through her own transplant battle but was in remission from the disease. Recently, however, her disease has come back and she is now beginning the next phase of treatment. There is no cure for this disease, but many treatments to put patients into a temporary remission. I pray that this particular treatment will put her into a longer remission than the last. We will take any and all prayers you are willing to share!!
We will probably be off line over the next few weeks as we begin our drive back home and then take our next trip to Colorado, so be patient with us on replying to any of your updates and news. We send our best to you all and hope that your summer (or winter, depending on where you are!) is going well.
Love and hugs to all!
Niki, Jeff, Eric and Brian
Sunday, June 29, 2003 8:06 PM CDT
Wow!!
Where has the time gone?? We are heading into week 5 of 7....it has gone fast! We even have a computer now in our hotel room, donated by one of the families who is going through the program also, but even so, our days are so full at the clinic and the evenings so busy with dinner/baths/bedtime, etc that I just haven't had time to sit and update.
I'm not even sure where to start. Mostly what I need to say is that Brian is doing AWESOME!! We still are not using the feeding pump....not even for hydration anymore!! Next week they are even going to try to get him to start taking his meds by mouth.....they are also beginning him with some self feeding and he is doing ok, but he still needs prompting. I don't know if the school will be able to keep him on task once he starts back.....they seem to think that he won't need that, but I am not convinced yet!! He is also chewing vegie sticks on his teeth and breaking it down to the point of swallowing it with only a few gags. He also seems to be having fewer episodes of retching since they started him on zofran....the thought was that he might get to a point of nausea during his feeds causing him begin retching. Hard to say for sure whether it is that or just the better control he has over his mind now. Either way, he is just doing great!! He has mastered the rice family, soy family and wheat family so far in terms of foods. They have introduced many different textures....not TOO bumpy yet, but a little bumpy and he is doing ok with it. He has had so many things to eat like waffles, soy nut butter and jelly sandwhich, cream of wheat, soy yogurts....of course, it's all pureed, but still.....next week they are going to introduce more vegetables, work more on the self feeding, and like I said before, the medications by mouth. It's a short week with the holiday, but they are going to have me start going into the room with him to begin feeding him myself...transitioning back to parental feeding and control. I will continue with that the following week, and then the final week Jeff will get his turn at it too.
We are getting ready to go it "alone" tomorrow too. My sister in law is leaving tomorrow so for the next two weeks the boys and I will be flying solo!! I think for the most part it will be fine, but Eric will be in "pool withdrawal" since he will be stuck with us at the hospital every day during the week! We have plenty of things to do so he shouldn't get bored, and it is just a short time. We are hoping to meet up with one of our fellow JMML families over the 4th.....looking very forward to that although it will be somewhat bittersweet.....we were hoping it would be to meet the entire family, but unfortunately it will have to be without the earthly presence of their precious son Colby who lost his battle with JMML on June 12th. I know he will be with us in spirit and in our hearts, but we will miss his being with us in person. Even so, we feel a real connection with the family as we have all gone through such a similar road....the endings are different, but the road to getting there much the same.
We also had a nice opportunity with the family who is lending us the computer this weekend.....they had us up for a bbq this wkd and it was a very nice relaxing time. It was a short drive north of Richmond, but felt like a million miles away from hotel and hospital! Thanks to Tony and Missy (and little Jakob) for the nice time and good food!
Brian has had several fun opportunities at the hospital too. The Richmond Indy Racing was in town today and one of the drivers (Robbie Buhl) was at the hospital Thursday. He had a photo op with Brian and was on the local news...we didn't know he was going to be on there, but we are going to try to get a tape. He also was supposed to meet up with one of the triple A ballplayers from the Richmond Braves, (Stubby Clapp), but he didn't show up unfortunately. Eric and I went to the game on Friday night and saw him play though.....it was a perfect night.
Well, I think that is it. I hope I haven't forgotten anything, but it's hard to keep it all straight! Hopefully I will have more opportunity soon. I hope you all are doing well. I LOVE getting all your guestbook entries, so keep em coming!! Our temporary email address with aol on this computer is mom2ecbc@aol.com if you want to reach us directly til we head back home.
Take care!!
Best always!
Niki, Eric and Brian
Tuesday, June 17, 2003 8:59 AM CDT
WEEK 3--FEEDING CLINIC
Good morning,
I know I am a little behind in posting an update and I apologize. Our schedule does not really allow a lot of time to get to a computer and stay there long enough to check messages AND write back or update!! However today, I guess I shouldn't say who, but someone (thank you-you know who you are!!)kind of snuck me on a computer to try to catch up while I am here at the hospital. Brian is at education and then follows that with child life.
Brian is doing really awesome here at the program. He is meeting all the goals and challenges they are setting for him and in some cases, blowing them out of the water! All last week they had him on rice based products and his allergy bloodwork showed no signs of reaction. This week we are moving onto soy based products....after one day of soy, he had some bowel problems (pretty loose), but I understand soy can do that so we are going to continue today to see if it continues or see if his system adjusts on it's own. I can't remember if I told you last time what they are doing for his chewing, but it is something that really helps him. They are using this mesh netting to put solid foods in (like cracker pieces, chips, even gummy candies). The mesh holds the pieces but allows him to chew them, get the flavors from them, but keeps them contained so that they aren't all over his mouth and tongue. This way he doesn't "freak out" not knowing what to do with the pieces after he chews them. They are also working with his tongue to teach it to move the "pieces" of solids or textures back to his molars to continue chewing them down to a smoother/smaller size that is then easier to swallow. He is doing pretty good with that and has been chewing several items without the mesh and getting them down with fewer gags. This week they are going to increase the textures too and work with him on those.
We have care conferences every Mon. and last week I asked his lead therapist Carol, if he would be done early since he was doing so well and making such good progress. She told me no, that they would keep him the full time because he had PLENTY of things to master in the time left. She said that even if he meets several goals, they have a lot to work on. If he plateaus or fails anything they will just move on to the next goal. They want him to master different textures, more volume, work with different foods to get around his allergies and self feeding too. I am so proud of how he is doing. Even though there are some things he is not crazy about, he just keeps on going. He is so eager to please and very compliant with everything they ask of him. He is even keeping them on track....he learns the routine quickly and if anyone alters any of it at all, he is quick to remind them they missed something!! Even with me at home for the dinnertime meal....he will say "Mommy!! it's TWO bites and then TWO drinks!!" or, "Mommy, we have to do our exercises first, THEN eat!!" He is so funny. Needless to say, everyone loves him here. What's not to love!?
Our days are very long, and very full, and even though I am not physically doing anything during the day, I am exhausted at the end of every day. A lot of hurry up and wait. We have a few breaks in between some of the feeds, so we try to get out to the library or run errands or go to the courtyard to play outside and then we rush back to be here for the next feed.....then I just sit and watch his feed through the closed circuit video/TV setup......I feel like I am back at work with the schedule we have....gone at 8:30 in the morning, and back home around 4 or 4:30. Then it's time for dinner, bath, play, bed and start all over again the next day! Trying to fit in grocery shopping or errands or fun things with the kids after clinic is somewhat stressful. I'm just grateful that I at least have my sister in law Kellee here to help out with so much! She will be here two more weeks and then we are all on our own.
We have managed to do a few things over the weekends but have had to find indoor things to do because it has been so rainy here. The first wkd we made it to the Childrens Museum/Science Museum. It was fun and there was lots to see. This past wkd we went to a movie..."Rugrats go wild". It was pretty funny. We are saving "Finding Nemo" for this coming weekend when Daddy/Jeff comes to visit. He arrives on Friday and we are all looking forward to seeing him. The weather is actually supposed to be nice Fri and Sat. so we might have to try for a beach trip....we'll see how that holds up as the wkd nears.
Our other good news is that by word of mouth (not confirmed yet), we heard that Brians medicaid from Nebraska will cover the charges not covered by his primary insurace. That is GREAT news!! A huge financial help.
Another note of interest, the nurse who runs things in the feeding area, Debbie, found out about our interest in Brian Daubach the baseball player. We found out about him a few yrs ago when he was playing for the Boston Red Sox and tried to contact him ourselves with no response. We are sure that he must be related to Jeff somewhere down the line...probably a second or third cousin or something, but there are so many members in Jeffs family, we aren't sure to whom the elder Brian belongs to. Anyway, Debbie decided to try writing to him herself, and eventually got in contact with his agent. The agent asked her to send something in writing to his attn and he would see what he could do. It would be pretty cool if they are able to work out a contact between us so we can figure out where everyone fits in the family tree. Thanks Debbie!!
Well, I guess I'd better close this down and get back to "work". I don't want to take advantage of the opportunity that I was given here. I hope you all are doing well and that you will continue to keep in touch. I appreciate all your notes and emails and calls.....it helps me to stay in touch.
Take care til the next time!
Niki
Friday, June 6, 2003 7:19 PM CDT
12:30 pm Friday
Hi everyone,
Just have a few min on the computer right now before Brian and I have to get back for his 12:45 feed. A note about him.....he is doing great!! Yesterday was his first "official" day and he did so good with his first three feeds, they said he didn't need his noon pump feeding!! Then his fourth feed he did so well, we were able to cut his 10 oz 6pm feed to 4 oz IF he would drink 4 oz of water too...........HE DID!, so they told me I didn't even need to bring his noon time pump feed today!.
He is doing so good......but I am so emotionally and mentally drained at the end of the day!! and then I get back to the hotel where Eric and my sister in law are and Eric is RARING AND READY TO GO with Mom!! I'm like, "oh man!!" But I feel so bad/guilty cuz I know he needs his time with me too! I found out that my Kellee can come and sit with Brian at the clinic sometimes so I can have a break and spend time AWAY from the hospital and spend one on one with Eric. So, I will do that soon!
************
Friday 7pm
Ok, another chance to get on the computer....this time I'm at Kinkos across the street from the hotel and paying for pc time, but it's worth it!! Just wanted to update a little more....Brian did so good today with his oral eating that we don't have to give him his pump the entire rest of the day!! He had his 7am pump feed and we were able to skip the noon, 6pm and bedtime feed....all he needs is some water for hydration!! The weekend is free to do as we please... no REAL schedule yet, and next week I think they will begin having me continue oral feeds with him at dinner time at the hotel and during the day on the weekends....we'll see. I knew he would do really well getting off the pump, but I thought it might be a week or two.....not 2-3 days!! I think they are really shocked! I tried to warn them that he would do well, and quickly, but I don't think they believed me! So now I imagine that they will be able to focus more on the teaching of biting/chewing/swallowing textures and solids.....they have even put some crackers in a little mesh netting and had him chew the crackers through the netting.....this way he gets the chewing action, gets the flavor of the crackers, but then doesn't have the pieces floating around in his mouth to gag on and freak out over!!
They all love him around here and he seems to be really enjoying himself all around!
I am not sure what we have planned for the weekend....I am so exhausted from this schedule already I wish I could just "veg-out", but, I need to make some "fun time" for the kids away from the clinic environment and also some time with Eric since we are pretty much separated every day during the day. He is certainly not bored, as he is swimming at the pool, playing basketball on the sports court, taking nature walks, reading, playing games, etc. with his Aunt Kellee.........however, SHE is wiped out from all of this activity I think!! It's a lot for both of us, but I am so grateful that she is here to pick up the slack for me and make it a little more fun for Eric. Saturday is supposed to be rainy, so we may do something indoors....maybe seeing "Finding Nemo" or going to the childrens museum.....maybe something outdoors on Sun.
Well, I'm pretty wiped out. I hope all is well with you. Please write when you can....I love the contact!! Thanks for all your notes.
Niki
P.S. Today is one of those anniversaries that I can't forget......6 yrs ago today was Brians first transplant.....look at him now!! :)
Friday, June 6, 2003 7:19 PM CDT
12:30 pm Friday
Hi everyone,
Just have a few min on the computer right now before Brian and I have to get back for his 12:45 feed. A note about him.....he is doing great!! Yesterday was his first "official" day and he did so good with his first three feeds, they said he didn't need his noon pump feeding!! Then his fourth feed he did so well, we were able to cut his 10 oz 6pm feed to 4 oz IF he would drink 4 oz of water too...........HE DID!, so they told me I didn't even need to bring his noon time pump feed today!.
He is doing so good......but I am so emotionally and mentally drained at the end of the day!! and then I get back to the hotel where Eric and my sister in law are and Eric is RARING AND READY TO GO with Mom!! I'm like, "oh man!!" But I feel so bad/guilty cuz I know he needs his time with me too! I found out that my Kellee can come and sit with Brian at the clinic sometimes so I can have a break and spend time AWAY from the hospital and spend one on one with Eric. So, I will do that soon!
************
Friday 7pm
Ok, another chance to get on the computer....this time I'm at Kinkos across the street from the hotel and paying for pc time, but it's worth it!! Just wanted to update a little more....Brian did so good today with his oral eating that we don't have to give him his pump the entire rest of the day!! He had his 7am pump feed and we were able to skip the noon, 6pm and bedtime feed....all he needs is some water for hydration!! The weekend is free to do as we please... no REAL schedule yet, and next week I think they will begin having me continue oral feeds with him at dinner time at the hotel and during the day on the weekends....we'll see. I knew he would do really well getting off the pump, but I thought it might be a week or two.....not 2-3 days!! I think they are really shocked! I tried to warn them that he would do well, and quickly, but I don't think they believed me! So now I imagine that they will be able to focus more on the teaching of biting/chewing/swallowing textures and solids.....they have even put some crackers in a little mesh netting and had him chew the crackers through the netting.....this way he gets the chewing action, gets the flavor of the crackers, but then doesn't have the pieces floating around in his mouth to gag on and freak out over!!
They all love him around here and he seems to be really enjoying himself all around!
I am not sure what we have planned for the weekend....I am so exhausted from this schedule already I wish I could just "veg-out", but, I need to make some "fun time" for the kids away from the clinic environment and also some time with Eric since we are pretty much separated every day during the day. He is certainly not bored, as he is swimming at the pool, playing basketball on the sports court, taking nature walks, reading, playing games, etc. with his Aunt Kellee.........however, SHE is wiped out from all of this activity I think!! It's a lot for both of us, but I am so grateful that she is here to pick up the slack for me and make it a little more fun for Eric. Saturday is supposed to be rainy, so we may do something indoors....maybe seeing "Finding Nemo" or going to the childrens museum.....maybe something outdoors on Sun.
Well, I'm pretty wiped out. I hope all is well with you. Please write when you can....I love the contact!! Thanks for all your notes.
Niki
P.S. Today is one of those anniversaries that I can't forget......6 yrs ago today was Brians first transplant.....look at him now!! :)
Friday, June 6, 2003 7:19 PM CDT
12:30 pm Friday
Hi everyone,
Just have a few min on the computer right now before Brian and I have to get back for his 12:45 feed. A note about him.....he is doing great!! Yesterday was his first "official" day and he did so good with his first three feeds, they said he didn't need his noon pump feeding!! Then his fourth feed he did so well, we were able to cut his 10 oz 6pm feed to 4 oz IF he would drink 4 oz of water too...........HE DID!, so they told me I didn't even need to bring his noon time pump feed today!.
He is doing so good......but I am so emotionally and mentally drained at the end of the day!! and then I get back to the hotel where Eric and my sister in law are and Eric is RARING AND READY TO GO with Mom!! I'm like, "oh man!!" But I feel so bad/guilty cuz I know he needs his time with me too! I found out that my Kellee can come and sit with Brian at the clinic sometimes so I can have a break and spend time AWAY from the hospital and spend one on one with Eric. So, I will do that soon!
************
Friday 7pm
Ok, another chance to get on the computer....this time I'm at Kinkos across the street from the hotel and paying for pc time, but it's worth it!! Just wanted to update a little more....Brian did so good today with his oral eating that we don't have to give him his pump the entire rest of the day!! He had his 7am pump feed and we were able to skip the noon, 6pm and bedtime feed....all he needs is some water for hydration!! The weekend is free to do as we please... no REAL schedule yet, and next week I think they will begin having me continue oral feeds with him at dinner time at the hotel and during the day on the weekends....we'll see. I knew he would do really well getting off the pump, but I thought it might be a week or two.....not 2-3 days!! I think they are really shocked! I tried to warn them that he would do well, and quickly, but I don't think they believed me! So now I imagine that they will be able to focus more on the teaching of biting/chewing/swallowing textures and solids.....they have even put some crackers in a little mesh netting and had him chew the crackers through the netting.....this way he gets the chewing action, gets the flavor of the crackers, but then doesn't have the pieces floating around in his mouth to gag on and freak out over!!
They all love him around here and he seems to be really enjoying himself all around!
I am not sure what we have planned for the weekend....I am so exhausted from this schedule already I wish I could just "veg-out", but, I need to make some "fun time" for the kids away from the clinic environment and also some time with Eric since we are pretty much separated every day during the day. He is certainly not bored, as he is swimming at the pool, playing basketball on the sports court, taking nature walks, reading, playing games, etc. with his Aunt Kellee.........however, SHE is wiped out from all of this activity I think!! It's a lot for both of us, but I am so grateful that she is here to pick up the slack for me and make it a little more fun for Eric. Saturday is supposed to be rainy, so we may do something indoors....maybe seeing "Finding Nemo" or going to the childrens museum.....maybe something outdoors on Sun.
Well, I'm pretty wiped out. I hope all is well with you. Please write when you can....I love the contact!! Thanks for all your notes.
Niki
P.S. Today is one of those anniversaries that I can't forget......6 yrs ago today was Brians first transplant.....look at him now!! :)
Friday, June 6, 2003 7:19 PM CDT
12:30 pm Friday
Hi everyone,
Just have a few min on the computer right now before Brian and I have to get back for his 12:45 feed. A note about him.....he is doing great!! Yesterday was his first "official" day and he did so good with his first three feeds, they said he didn't need his noon pump feeding!! Then his fourth feed he did so well, we were able to cut his 10 oz 6pm feed to 4 oz IF he would drink 4 oz of water too...........HE DID!, so they told me I didn't even need to bring his noon time pump feed today!.
He is doing so good......but I am so emotionally and mentally drained at the end of the day!! and then I get back to the hotel where Eric and my sister in law are and Eric is RARING AND READY TO GO with Mom!! I'm like, "oh man!!" But I feel so bad/guilty cuz I know he needs his time with me too! I found out that my Kellee can come and sit with Brian at the clinic sometimes so I can have a break and spend time AWAY from the hospital and spend one on one with Eric. So, I will do that soon!
************
Friday 7pm
Ok, another chance to get on the computer....this time I'm at Kinkos across the street from the hotel and paying for pc time, but it's worth it!! Just wanted to update a little more....Brian did so good today with his oral eating that we don't have to give him his pump the entire rest of the day!! He had his 7am pump feed and we were able to skip the noon, 6pm and bedtime feed....all he needs is some water for hydration!! The weekend is free to do as we please... no REAL schedule yet, and next week I think they will begin having me continue oral feeds with him at dinner time at the hotel and during the day on the weekends....we'll see. I knew he would do really well getting off the pump, but I thought it might be a week or two.....not 2-3 days!! I think they are really shocked! I tried to warn them that he would do well, and quickly, but I don't think they believed me! So now I imagine that they will be able to focus more on the teaching of biting/chewing/swallowing textures and solids.....they have even put some crackers in a little mesh netting and had him chew the crackers through the netting.....this way he gets the chewing action, gets the flavor of the crackers, but then doesn't have the pieces floating around in his mouth to gag on and freak out over!!
They all love him around here and he seems to be really enjoying himself all around!
I am not sure what we have planned for the weekend....I am so exhausted from this schedule already I wish I could just "veg-out", but, I need to make some "fun time" for the kids away from the clinic environment and also some time with Eric since we are pretty much separated every day during the day. He is certainly not bored, as he is swimming at the pool, playing basketball on the sports court, taking nature walks, reading, playing games, etc. with his Aunt Kellee.........however, SHE is wiped out from all of this activity I think!! It's a lot for both of us, but I am so grateful that she is here to pick up the slack for me and make it a little more fun for Eric. Saturday is supposed to be rainy, so we may do something indoors....maybe seeing "Finding Nemo" or going to the childrens museum.....maybe something outdoors on Sun.
Well, I'm pretty wiped out. I hope all is well with you. Please write when you can....I love the contact!! Thanks for all your notes.
Niki
P.S. Today is one of those anniversaries that I can't forget......6 yrs ago today was Brians first transplant.....look at him now!! :)
Thursday, June 5, 2003 9:10 AM CDT
Hello all.
Just a moment here at my first trip to the library. My sister in law
and the boys are looking at books to check out while I type away
quickly........don't want to take advantage of them too much.
Basically just wanted to let you know we made it here ok and are
fuddling through. We drove it in 3 8hr days without much trouble. Had just
enough time to get unpacked and then had to send Jeff out to the airport
the next morning to go home on Sun. Later on Sun afternoon, Eric
starting getting a sore throat and fever and was then up all night
vomiting.....needless to say, since I was alone, we couldn't make our first appt
at the feeding clinic on Mon. My sister in law, Kellee, got in Mon
night so Brian and I were able to hit the clinic today instead. It was one
of our short days (again tomorrow) and then we will be on the regular
schedule going from about 9-3:30 every day M-F. I was exhausted today
and it was only the first day.........more mentally than physically, but
after we got back to the hotel I got in a run on the treadmill, another
shower and I felt refreshed and ready to go again.........so that's why
we are at the library. I am not sure how often we will get here, but I
just wanted to let you all know we are doing ok and ready to get
started. Their first impression after watching him eat today was that he will
do really well. They certainly LOVE him, that's for sure!! He likes
everything there except the eating!! He will have a feed at 9am, followed
by school at 9:30, child life (play time) at 10am, another feed at
10:45, another feed at 12:45, and the last feed at 3pm. That's all I know
so far as far as our schedule goes.
Well, I hope all is well with you guys. I read all the emails but it
might be hard to reply to each of them. I am glad to hear that most of
you are doing well adn I will try to reply when I have more time. Take
care and know I am thinking about you all.
Niki
******************
NEW ENTRY DATED 6/4/03
Hi...me again.
We are on day three of feeding clinic today. The first two days were sort of baseline days to get a feel for where Brian is and what they want to do with him. Today starts "the real thing!". He had his first feed this am at 9am, and right now he is at school, followed by child life play time, and then his next feed. I found a library close to the hospital to come to while he is busy. All is going well....Eric is feeling much better and today the sun will be out and the skies clear and 80, so he will be so happy to be able to go to the pool at the hotel with his aunt.
Not really much else new. We are trying to figure out what we are going to do this weekend as it will be our first "break" from clinic. Thanks to you all for signing the guestbook....I really appreciate it as it makes me feel more connected to you and the rest of the world! It looks like one way or another, I will be able to check in briefly at least every day, so keep writing to me!
Hope all is well with you.
Take care.
Niki
Tuesday, May 27, 2003 9:26 PM CDT
Hello to you all,
This is just a quick update before we head out for Brians feeding clinic. First of all, it took a lot of work and fighting, but we got the insurance company to overturn their denials of Brians care!! Basically what happened, is that they needed to be shown in detail what the charges would be and what they were for. When they saw it all broken down, and realized that they were charges that he incures here for the same types of services (speech therapy, behav. psych, GI doc, etc.), they were ok with it. When they initially saw what the lump sum of daily amount would be, they said no. We still don't know if the state of NE. will pick up the excess, but we have some time to get that one worked out. I hope they will come through.
Brian had his 4 year post transplant check up today and all went well. He had labs drawn, and he was very good and held very still. His labs were all very good and normal except for his calcium level (too high) and his phosphorus (too low). Not sure what this means, but the nutritionist is checking into it all and will let us know what to do before we leave. At least his other counts were all normal. This means we can now go an entire year without an oncology check up (unless we have concerns before then)!! It was good to see the oncology team and I know they are so pleased to see Brian with all the many changes he continues to make. He has really come such a long way!
School ended last Friday and both boys did very well and will be moving on next year. We have some activity books that we are taking along with us this summer to keep up their skills and get them ready for next year as well. They love to do these books, so it's really not like "homework". In fact, they've been bugging me already to start working in them and I have had to tell them "not yet"!!
I don't know how much we will be able to communicate online while we are away. It depends on where I can find computer access while we are gone. Some libraries have free computer use, but there is also a Kinkos across the street from our hotel where I know we can pay to use public computers as well. I will update when I can and I will at least try to keep the website updated if nothing else, so be sure to check in there to see what's going on or to leave us messages on the guestbook. Check the bottom of this update for the address. I will also post the phone number where we are staying if I can.
I wish you all the best of health and happiness while we are away.
Take care and write often!! I'll miss you all!
Niki Daubach
Thursday, May 15, 2003 10:44 AM CDT
Hello all,
Just wanted to update you on the latest here.......lots going on, and not all of it good! (for some of you, some of this news is a repeat, so I apologize!)
First, about10 days ago, we had a small incident with Brians g-tube.......it accidentally got pulled right out of his tummy!----oops! We got that cleaned up and put another one back in....no big deal. Then, the next day a tornado blew through here, literally, however we were fortunate enough to have it bypass us. Unfortunately, it DID hit the Kansas and Missouri areas with disasterous results. For all those involved, I am truly sorry.
While the weather outside was blowing through, we had some storms "inside" as well........it started with Eric complaining of stomach pain.....then vomiting......stomach flu just came out of nowhere!! While he was resting on the couch, Brian decided to stand up on the couch (which is a no-no!), fell off backwards, hitting the back of his head on our glass coffee table.......big open gash and bleeding! At the same time, Jeff started feeling sick and nauseated, so I took Brian to the urgent care for stitches, leaving him and Eric to compete for time in the bathroom!! When I got home (Brian received 4 staples in his head), they were both still getting sick. Let's just say it was a VERY LONG NIGHT for ALL of us!....somewhere in the middle of the night while I was taking care of Eric, I noticed blood on Brians pillow......his head wound was clean and clear, so where was it coming from???? I finally found it coming from his mouth.....why? I don't know......got things cleaned up and he was fine (I was worried about internal bleeding from his head injury, but he was not disoriented or goofy or anything, so I just kept a close eye on him the rest of the night). The next morning, Eric and Jeff were much better, Brian was fine with no complaints of pain, and then it was MY turn to feel nauseated and sick. On my way to the bathroom, I passed out, banging up my head and face pretty good in the processs! It was a LONG day, needless to say. but I was much better 24 hrs later, and now, over a week later, my face still hurts in some areas.....oh well. Everything seemed to calm down around here after that and got back to normal......until this Tues, and then Brian got his turn at the stomach virus! Since he can't vomit, he was just very "gaggy" and ended up with diarrhea and fever and stayed home yesterday. Today is better and he is back to school. He gets his staples removed at the doctor this afternoon.
For a little added drama, last week we also got news that our insurance company has denied us coverage of Brians planned trip to the feeding clinic this summer (we were supposed to be leaving in about 10 days!). So, we began with the appeals process. They moved quick to re-evaluate our appeal (they rc'd it on Mon and sent out second denial Tues which we received yesterday). There are two more avenues of appeal we can try (more hoops to jump through!), which I will begin today, however I don't hold much hope for them. Our other hope is that Brians medicaid waiver might be able to help......initially they said that IF they agreed to help, Brians primary insurance FIRST had to agree to cover at least 1 f the bill, and then they would kick in.......now that we aren't even getting that, it's doubtful they will help. However, the case worker said there have been a few rare occasions that they HAVE picked up the whole bill, so I will check into that as well. I hate dealing with all this crap, and jumping through hoops like this, but we have to do SOMEthing to get Brian the help he needs to get through this last medical roadblock! So, we forge ahead........
I think that about catches us up a little since the last update......Brian does have his next oncology work up (it's been 6 mos since the last check) next week. I don't expect any bad surprises, but it's still comforting to get normal counts back and a thumbs up from the oncologist that things continue to be clear on the leukemia front. I'll let you know about that visit as well as the latest results on the quest for insurance coverage for the feeding clinic this summer in a week or so. Keep your fingers crossed that we get good results on both of these hurdles.
I'll leave you with a little taste of our excitement from yesterday........the day started out beautiful and sunny. Brian was home from school, but feeling good enough in the afteroon to go run some quick errands with me......as we headed out, the skies began to turn black and the clouds were looking very ominous........it looked pretty scary, but I went on the assumption it was just a rain storm brewing.....our last stop was the grocery store for just a few items. We filled our cart and we were heading to the checkout when there was an announcement over the store saying we were under a tornado warning........they were shutting down the checkout lanes, and we either needed to leave our carts and leave the store immediately, or head to the store shelter in the meat dept.!! AAAAAAAACCCCKKKK!! What???
I said, "is this for real?" One of the clerks said, yes, very serious. I had to think quickly......if this passed quickly, waiting in the meat dept wouldn't be so bad......but if it goes on for a long time, wouldn't we be more comfortable in our own homes shelter? The emergency alerts had not gone off yet, so I grabbed Brian, left the store, headed home (1 mile away) and we headed for the basement, turned on the TV and they showed that this was all very real! The emergency alerts were going off now........then I thought about Eric at school.......a mile away, so I figured they were having to do the same thing. He is TERRIFIED of tornados and dying in one, so I hoped he was doing ok, and not too scared. He certainly wasn't alone at least......I found out later that they all gathered together in their appointed places (every grade had a different place to go.....for Eric, the 7 classes of second graders had 125 kids and went to one of the inner rooms of the building), sat on the floor, lowered their heads down over their legs, wrapping their arms around their heads.......he says they sat like that for an HOUR!! Again, very fortunately, all we were hit with was severe rain and lightening, but other parts of the city had golf ball sized hail and a tornado was seen trying to touch down in the central part of town. I'm glad everyone was spared, but it was pretty scary there for a little while!! I have always loved spring, but I think I'll pass up on "spring in tornado alley"........NOT fun! ....and it's only the beginning of tornado season! I think we have had more than enough excitement around here the last few weeks, don't you? It's time to move back to boring and normal I think!
With that, I will say that as always, I hope you all are well and safe and healthy. I'll be in touch again soon.
Take care.
Niki Daubach
Wednesday, April 30, 2003 7:59 AM CDT
DAY +1570!! (See below for what this means!)
Hello to all!! Happy Spring!
So, what has been happening with the Daubachs over the last few months?? I guess we are overdue on an update, so here goes. (WARNING--this update is long, so pull up a chair and grab something to drink! hee hee------->when are my updates NOT long?? ;) )
The last update I wrote, left you all with the zillions of questions we had to think about to prepare for Brians summer feeding clinic. I can't tell you how many comments I received on that update!! I had no idea my "ramblings" would affect so many people! The response was all positive, but mostly, everyone said they liked the honesty in my "thinking out loud"!! Thanks for all the nice feedback!
So, plans are progressing to get us on our way. As plans sometimes do, ours have changed a few times even since I wrote last, and may change again before we actually go. We were going to have my niece come with me to Virginia and have my sister in law, Kellee, come to Omaha to help out with Eric (so Jeff can still work). However, Erika has had some changes to her plans for the summer so I'm not sure if "plan A" will work out. If they work out for her (which I will be very happy for her if they do!!), then we will move on to "plan B". I'm not sure what plan B is yet! ha ha........it could be that my mom will be available for a week or so to come out and help me, or it could be that I am on my own the whole time. No matter how it works out, I will be fine.......any help would be great, but it's not an absolute necessity.......more like a "luxury"! Either way, we at least have Kellees help in Omaha, so we are VERY grateful for that!
The other huge help in all of this is that the hospital in Virginia has agreed to set up a contract with Brians special medicaid waiver here in Nebraska, so that we will have additional financial coverage. This waiver works kind of like a secondary insurance for him, and covers all co-pays. deductables, and things not normally covered by his regular insurance. This is HUGE! We still have to jump through one more hoop to make this a reality, and that consists of a letter of medical neccessity from Brians pediatrician and GI doc. If the State of Nebraska accepts this, then we are all set. What a huge help this will be!! Keeping my fingers crossed for that.
Ok, so next. Once Brian is done with the feeding clinic, (approx 7 wks long) we are planning a little vacation as a "reward" for all our hard work! Initially we were thinking about Hilton Head, then we started making plans for Orlando........now we are putting Fla. on hold and are heading back to Colorado instead. We have not ALL been back to Colorado as a family since we moved because we have been trying to let Brians lungs grow and heal. In October, it will have been 3 yrs, and since he has come such a long way in development and growth, we are ready to test his lungs and see if he is able to handle the altitude without the need for oxygen. We call this vacation "Brians Colorado stress test". If he passes, it opens the door to our moving back. If not, it means we look for another place to relocate. (Omaha, even though it has provided us with many good things, has never been a place we wanted to make our permanent home). We initially thought we would do this "Colorado stress test" over Thanksgiving or Christmas or spring break, but after talking to Brians Colorado pulmonologist, it was suggested that the best time to test him, would be in the summer. She said the winter would add the risk of RSV season and the spring would add the complications of allergy season. If Brian had any problems, we might not know whether it was allergy related, RSV related, or just the altitude. By going in the summer, we erase any question about whether his damaged lungs can handle just the change in altitude. Make sense? So, we will come home from Virginia, unload, and then head to Colorado for a week. Hopefully Brian will be ok, because it would probably be a real hassle for him to have to hook up to oxygen after all this time without it. My guess is that we would cut our trip short and head back home if he still needs oxygen........why put him through all that and risk pulmonary complications as well. Keeping our fingers crossed for healthy lungs too!
Next, let's see. Other than the main news about Brians need for the feeding clinic to teach him how to eat and get off the feeding pump, the only other medical type news is that he is undergoing evaluation for attention and focus problems. As more and more times goes by, it becomes more and more evident that he is having some real problems with these areas. Who knows for sure what the cause is, but one of the things we feel pretty certain of, is that these problems could be some of the long term effects of the chemo/treatment he had to save his life. We knew going into treatment that there were many "possible" long term effects and/or complications, but you decide at the time to just deal with those if/when they come, in order to focus on the immediate goal of survival. So here we are, almost 4 yrs post bone marrow transplant number TWO! To be precise, it has been 1,570 days since his last transplant (which explains the "Day +1570" at the top of the update). Counting days is really big during transplant, and shortly after, for the transplant team to evaluate where the patient is post transplant. Certain complications and hurdles are expected at specific days post transplant, so this helps them to keep track of what is normal and what is not. In the beginning, we knew exactly what day post transplant we were. Now, we are so far out, nobody even counts anymore! In fact, I had to sit down with a calendar and figure it out! The reason I wanted to include it today is because I wanted to show just how far Brian has come.......we are in touch with many new families whose children have been diagnosed with the same disease that Brian had, and who are now fighting for their own lives. They have recently begun, or are about to begin, the long road to recovery with transplant and treatment. It is not always an easy road, and is filled with many days of worry, fear and frustration. I just want to share with them that there is always hope for their children by showing where Brian is now. Despite many setbacks and complications, he has SURVIVED! I hope and pray that their children do too. Brians next oncology check up comes just before his 4 yr anniversary post transplant, and just before we head to Virginia. Of course, it's been almost 6 yrs since his first transplant, but we don't really count that because that one didn't work completely. It is referred to as his "re-birthday" (re-born with new life saving cells) and his 4th re-birthday will be on June 11, 2003. We are ever so grateful to Brians donor, Mark, and grateful to be at this point, but we will celebrate "officially" when he hits 5 yrs post transplant, next year. After 5 yrs cancer free, they use the magic word, "cured". It doesn't guarantee 100% that he will never go down this road again, but it sure feels good to be that far out without relapse. (ewwww, THAT word doesn't sound good........
Alright, the last details of this update. Brian has adjusted well to having glasses. He wears them now without as much complaint, but still needs reminders not to put his fingers all over the glass parts! How he can see through them sometimes, I don't know! He has now joined the "tooth fairy" world with 4 lost teeth and school is still going very well for him. They assure me he is doing well enough to move onto 1st grade next year. Even if he no longer needs the nursing care at his school for his feeding pump, I am pretty much assured that he will be able to stay at this school where they can better meet his therapy needs and continuing developmental needs. This makes us feel very good. As much as we love our neighborhood school where Eric goes, it is just sooooo big, I am not sure it meets the needs of someone like Brian. I hope we don't have to fight to keep him where he is, but if we do, we are ready!!
Not much new with the rest of us. Eric continues to excel in school and baseball season has begun for him. School is coming to a close for both of them. Brian is overjoyed about a field trip to the zoo with his class. There is not a whole lot new with Jeff and me. Jeff has a short trip coming up next month to do some continuing edcuation through work, and he will be able to visit with some family and friends too. Otherwise, we are just busy as mom and dad, doing home improvements and working out the details for our summer travels. I really don't have any spectacular new photos, but have included one of Brian with his "wild" hair as well as the boys at the local Easter egg hunt. You can see them under the "view photos" link. I hope you all are well and happy and that your spring and summer are spectacular! Take care.
All the best,
Niki
Sunday, February 23, 2003 5:54 PM CST
Hi all,
Just wanted to drop you a note about our trip to Virginia this past week and Brians evaluation at the feeding clinic there. Despite all the terrible weather that was going on out east, we made our trip just fine with no delays.
Basically, things went very well; they accepted him as a candidate in their program, and it is up to us to decide if we are going to or not.......gee, should we?? LOL DUH!! We will do it, but we have to spend some time figuring out the logistics of it all. How will we do it? how will we manage? will Eric come with us? if not, who will take care of him here while Jeff works? if Jeff only works part time so he can care for Eric, does that eat up too much of his vacation/PTO? and how much fun is it for Eric to be home but spending time elsewhere the whole time? how much of a burden is it on friends or caregivers to have to help out? who wants to ask that of anyone anyway!!? if Eric comes with me (which I want), will he be ok while I am focusing most of my time and attn towards Brian and his therapy/feedings? (the program frowns upon siblings being with you because it takes your time and attn away from the child in need) or could we find someone to come with us to sort of help out (and give me relief once in a while for some sanity breaks? LOL) if we take someone, who would it be? how much would we pay them? would Jeff stay home and work the whole time? or come out once or twice to visit before we are done? How much will it cost us to rent a place or stay in a hotel? food? expense to fly back and forth for Jeff to visit while taking a break from working? traveling expenses when we make the trip out and back? how much will insurance cover towards this program? will Virginia set up a contract with our Nebraska medicaid to help pick up co-pays, deductables and things not covered by insurance? if not, how much out of pocket expense will all that be??? etc., etc. etc..........So, you can see where we are right now.......not to mention trying to figure out the best dates to do this......and the fact that the time it will take to complete this program is not certain.....they say average is 6-8 wks......sometimes less, sometimes more.....depends on the child and how fast or slow they progress........we wanted to plan a "real" vacation for after this was all done too, but how can you really do that if you don't know for sure when you will be done?? Jeff has a medical convention he can go to out at Hilton Head, SC. that would pretty much pay for a great vacation for us, but we can't be sure Brian will be done.....or if he is done early, can we afford to kill time waiting til the conference starts??? We will manage to figure it out, but it's just sort of all over the place right now.......
The one thing they said that was disappointing to me was that "no" after 8 wks, he wouldn't be eating steak and corn on the cob!!........maybe he would be far enough along to be eating soft solids (french fries?? chicken nuggets?? lumpy purees??), but it was uncertain.......they said he will eat all those things SOME day, but they couldn't promise it would be at the end of this program THIS time........so, what type of success we have depends on what our goals are........if we want him totally free of g-tube feeds, then YES we can certainly have that taken care of, and we can be feeding him lots of things that can be pureed that are filled with protein and fats, and all the nutrients and vitamins, etc. that he needs, all while avoiding the food allergies he has too (milk, pork, peanuts and peas were the strongest......rice, soy was less reactive, but reactive).......so, being completely off the pump and the tube would be WONDERFUL and very free-ing, but I was kind of hoping for some kind of miracle treatment that would have him eating like a pig all the things that most of us eat too! Just goes right along with everything else we have ever had to endure with him..........nothing worthwhile ever comes easy........but it does or has come with patience and a one day at a time attitude......darnit!! Just glad it has all come.......but I do get tired sometimes of having to wait! It's always better than the alternatives though, so I try not to complain much!
I'll keep you posted as we figure out the details. It feels very much like when we had to plan to go away for transplant both times, but this time we're not talking about life or death.........so that's good!
Talk to you soon.
Niki
Sunday, February 16, 2003 9:48 AM CST
Happy (belated) Valentines Day to all,
I hope all is well with you. We are sort of locked in here with about 8" of snow from yesterday but the sun is out and it's making the snow sort of sparkle.
So, to catch up from the last update a bit.....Eric had his 8th b-day party and it went well. He enjoyed it, but with all the excitement and loud kids he got a little nauseated at one point and we had to rush him off to the bathroom. Once he had some quiet he began to feel a little better and said, "I think this is the last big party for me........it's just too much!".........anyway, he continues to do well in school and has been selected to the math challenge group. He is signed up for baseball that will begin in about April and he is enjoying the snow whenever we get it, now that he has a snowboard to go down the hill out back......no matter how cold it gets, it's still hard to get him to come in!
Brian is doing well too. His reading just gets better and better every day, and he is doing better with scissors too. We had a quick visit to the endocrinologists office for a height and weight and he is still continuing to grow.....slowly, but progress just the same. He is now 39 3/4" tall and weighs 40 lbs at 6 1/2 yrs old. Well below where he should be, but like I said, at least he is still growing.
As for the allergies and situation with the cat, we still have Quincy and he will be staying for now. With the new meds we have been giving Brian and with some other changes at home with filters, etc. Brian seems to have more relief.......however, we also realized that because of some of Brians other environmental allergies, he is going to have the same symptoms whether the cat is here or gone.......so making the cat go would not change Brians symptoms; he would have them with his strong allergies to ragweed etc.
As to the Telemed conference we were supposed to have Feb 4th with the feeding clinic out in Richmond, Va, that didn't work out, sooooooo, we are flying out there instead. Brian and I leave tomorrow (Mon 17th) to fly out.......we get in late and see the feeding clinic on Tues morning at 8:30am. The visit is a couple of hours while they examine him, watch him try to eat, ask questions, etc and then we fly back home Tues night. This visit will hopefully confirm to them that he is a candidate for their program so that we can come back and have them teach him how to bite, chew and swallow textures and solids without gagging and wretching and without fear of choking. It might take as long as 8 wks once we are there, but we should have some idea on that after our visit this week. It is our hope that this will help Brian move into the most "normal" life he has ever had......no more pumps, g-tube, etc. It is his last big hurdle. There are supposed to be some pretty big snowstorms going on out east so I hope our flight goes well and there are no delays.....
So, I think that's about it. Brian did have another esophogram on Feb 4th to check for esophogeal stricture, but it was clear and open so he will not need another dilitation through the scope for now. We did also get our digital camera working and took a few photos.....some are on the webpage and some are at the yahoo photo page (link on his webpage too). I'm afraid we've been too busy to take a lot, but there are a few that are at least new with the boys in their glasses.
I will leave you with a little "story" that was sent to me awhile back called, "Thoughts of a mom" by Maureen K. Higgins. I know some of you have already seen this, but for those of you that haven't, I wanted to share it with you. It really could apply to a father or grandparent, sibling, etc. etc. or to anyone involved in the life of a special needs child. After I read it, tears were streaming down my face.......it hit really close to my heart and my home. (thanks for sending it to me Mimi)
**********************************************************
Thoughts of a Mom
By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you
out every day. I've looked for you on the Internet, on playgrounds and
in grocery stores. I've become an expert at identifying you. You are
well worn. You are stronger than you ever wanted to be. Your words ring
experience, experience you culled with your very heart and soul. You
are compassionate beyond the expectations of this world. You are my
"sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite
sorority. We are special. Just like any other sorority, we were chosen
to be members. Some of us were invited to join immediately, some not
for months or even years. Some of us even tried to refuse membership,
but to no avail.
We were initiated in neurologist's offices and NICU units, in
obstetrician's offices, in emergency rooms, and during ultrasounds. We
were initiated with somber telephone calls, consultations, evaluations,
blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were
pregnant, or we had just given birth, or we were nursing our newborn, or
we were playing with our toddler. Yes, one minute everything was fine.
Then, whether it happened in an instant, as it often does, or over the
course of a few weeks or months, our entire lives changed. Something
wasn't quite right. Then we found ourselves mothers of children with
special needs.
We are united, we sisters, regardless of the diversity of our children's
special needs. Some of our children undergo chemotherapy. Some need
respirators and ventilators. Some are unable to talk, some are unable to
walk. Some eat through feeding tubes. Some live in a different world.
We do not discriminate against those mothers whose children's needs are
not as "special" as our child's. We have mutual respect and empathy for
all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever
materials we could find. We know "the" specialists in the field. We
know "the" neurologists, "the" hospitals, "the" wonder drugs, "the"
treatments. We know "the" tests that need to be done, we know "the"
degenerative and progressive diseases and we hold our breath while our
children are tested for them. Without formal education, we could become
board certified in neurology, endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what
our children need to survive, and to flourish. We have prevailed upon
the State to include augmentative communication devices in special
education classes and mainstream schools for our children with cerebral
palsy. We have labored to prove to insurance companies the medical
necessity of gait trainers and other adaptive equipment for our children
with spinal cord defects. We have sued municipalities to have our
children properly classified so they could receive education and
evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means
walking away from it. We have tolerated scorn in supermarkets during
"tantrums" and gritted our teeth while discipline was advocated by the
person behind us on line. We have tolerated inane suggestions and home
remedies from well-meaning strangers. We have tolerated mothers of
children without special needs complaining about chicken pox and ear
infections.
We have learned that many of our closest friends can't understand what
it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To
Holland" and Erma Bombeck's "The Special Mother." We keep them by our
bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically
handicapped children to the neighbors' front doors on Halloween, and we
have found ways to help our deaf children form the words, "trick or
treat." We have accepted that our children with sensory dysfunction will
never wear velvet or lace on Christmas. We have painted a canvas of
lights and a blazing Yule log with our words for our blind children. We
have pureed turkey on Thanksgiving. We have bought white chocolate
bunnies for Easter. And all the while, we have tried to create a festive
atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd
make it through another day, and gone to bed every evening not sure how
we did it.
We've mourned the fact that we never got to relax and sip red wine in
Italy. We've mourned the fact that our trip to Holland has required
much more baggage than we ever imagined when we first visited the
travel agent. And we've mourned because we left for the airport without
most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they will
achieve in life knows no bounds. We dream of them scoring touchdowns
and extra points and home runs. We visualize them running sprints and
marathons. We dream of them planting vegetable seeds, riding horses and
chopping down trees. We hear their angelic voices singing Christmas
carols. We see their palettes smeared with watercolors, and their
fingers flying over ivory keys in a concert hall. We are amazed at the
grace of their pirouettes. We never, never stop believing in all they
will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold
tight to their little hands as together, we special mothers and our
special children, reach for the stars.
***********************************************************
So, with that I say good bye for now. I will try to update after our trip to Virginia to let you know the news. Take care everyone. As always, I thank you for all your support and love over the years........it's a huge part of what gets us all through these days......
Warmly,
Niki
Wednesday, January 01, 2003 at 09:05 PM (CST)
*** I ADDED SOME NEW PHOTOS~~CLICK PHOTOS ***
Happy Holidays, Happy New Year everyone!!
I hope your holidays were nice. It's hard to believe how fast the year has gone, but it was really a pretty good year for us.
The holidays were nice for us.....no big plans or trips for Christmas.....it was just us. The kids had a lot of fun and it was the first Christmas that Brian really understood what it was, and had a better concept of time so that he could countdown to Christmas. He was so cute opening gifts.....he said thank you after every one and said "Oh, I am soooo happy".....he also wanted to make sure everyone else had a gift to open too.....he was very thoughtful!
It was good for all of us.....thanks again to all who sent gifts to the boys......it was a big year for dinos, movies, books, games, etc. We also had the usual Christmas programs to go to at school, although we missed Brians because he got sick and had to come home early that day.....Jeff and I had a night out for his work Christmas party......a chance to dress up and "play" without kids!! After the cocktails and dinner, we cut out and went to see a late movie. Whew! Hard to stay up that late anymore, but we had a nice time.
We're not quite done with celebrating though.....Erics 8th b-day is Sat the 4th and he is having a party at the Strike Zone.....a baseball facility where they will play an indoor baseball game with a whiffle ball. It should be fun. Last "big" party though......after this it will have to just be a couple of friends coming over or going out somewhere.....
Let's see, on to other news. Jeff's neck is finally recovering pretty well from the car accident back in July. That was kind of a pain. I know he's glad to no longer have that nagging at him. My shoulder also has gotten a lot better. I'm finally back to my weight training, although I am limiting the amount of weight I use......moving back into it slowly. It seems that the only time I get any little "twinges" of discomfort are related to every day things or dealing with lifting Brian. Can't do much about the life stuff except be as careful as I can.
We finally decided on a camera and bought it for ourselves for an early Christmas gift. Problem is, I haven't had much time to read through the manual to figure it out completely......I can take photos, and have downloaded the software, but I can't get the photos I've taken to save into my own files so that I can email them or put them on the website.......usually these things are pretty basic and easy and I have no trouble, so I don't know why it's not working for me.....hopefully once the kids are back in school, I can spend some time working on it and get new photos to the yahoo photo page on Brians website. I did at least scan a Halloween photo of him from our 35 mm and added it to his photo page, so you can at least see that for now. We have some cute ones with him in his glasses.......ooops! I haven't gotten to that news yet! More on that in a minute! Anyway, I've delayed this update a little bit thinking I would have new photos to put up for you all, but it just isn't happening right now, so you will just have to check in from time to time to the website to see if they are done. Thanks for being patient.
My parents came out for a visit before Thanksgiving so that my mom could have her post transplant check up. All went well and she got the "all clear" on her multiple myeloma!! YEA!! Great news! I can't believe how well she did with her transplant.....that's not to say there weren't some difficulties or complications, but overall, she did very well. I hope this turns out to be the cure that has not been found up to date. She is still doing pretty good, and they are planning a trip back to their "other" home in Mexico in January. They've been gone for almost a year and have lots to sort through as they figure out whether it's going to stay as "home base" or whether it's time to make it more of a getaway while they spend the majority of their time at home in Colorado. Tough choice, but things do change when medical issues and health care are involved.
I was lucky enough to have a little getaway by myself after Thanksgiving. Jeff had some time off and suggested that since he would be home anyway, perhaps I might like to take some time "off" and go somewhere. Wow! Nice offer. Of course, I thought that it would be nice to spend some time together as a family, but Jeff reminded me that he would be off work again for 16 days at Christmas while the boys were out of school, so I would have plenty of time to spend with my family then. I took him up on his offer and drove home to Colorado for a few days. There were more people I wanted to see than I had time for, but I did my best to make it to as many as I could. For those of you that I did get to see, it was great to see you and lots of fun.....for those I didn't make it to, I'm sorry, but next time I'll make it happen. It was a great trip......a nice break from my "job" at home......didn't miss the cleaning, cooking, laundry, etc. or the kids bickering!....also didn't miss having to deal with Brians feeding pump every day, but I DID miss my "guys"!!! I had a good time, but it was really good to be home again too.
Well, I guess it's time for Brians news. He's had his normal array of aches and pains and complaints. Most of them related to his tummy and winter colds/allergies. Colds are a pain anyway, but for him, the increase in mucous really affects his feedings and make him very uncomfortable......he can't tolerate his feeds as well, gets really gaggy, and his gastric emptying slows down. One of his colds turned into a sinus infection.....he was on antibiotics for that and the symptoms got better. About two days off the meds and the symptoms returned again.......this was complicated by the fact that we had to discontinue his regular allergy meds so he could be allergy tested, which we finally got done Mon the 30th. It seems he is very allergic to much of the environment!!!!! His highest reaction was to ragweed and cats.......and guess what? we have a cat!! We've had him for 10-11 yrs and the doc says HE HAS TO GO in order to make any difference for Brians allergies. It breaks our hearts.........I don't know what to do. I need to find him a new home, but how do I do that and still be assured he will be well taken care of? Man, I just can't think about it right now. He's a good cat, and he's VERY vocal (likes to talk!), but he's so personable and loving and friendly.......he's been a part of our family longer than the kids, but given a choice, there is no choice. I can't even write about it anymore........so, anyway, the other allergy testing that we REALLY went for was for food allergies......there was no surprise in his milk allergy, but he's also pretty allergic to pork, peanuts, and peas too. Strange combo. He has a little reaction to a few other things too, so it's going to be interesting trying to figure out what we can feed him. We are waiting to hear from the GI doc about what to start with. In the meantime, he is still being totally tube fed. We are checking further into a feeding clinic at The Childrens Hospital of Richmond, Virginia. If it works out and they feel he is a candidate, we may be going there for anywhere from 4-8 wks next summer to tackle this feeding problem once and for all. We are hoping to have a teleconference with them in Feb. to have an intial evaluation. More on this as it develops.
Other news.......good news, actually!! Our little Brian, who is not so little anymore really, is READING now!! I don't know why I am so shocked, but I guess with all that he has been through, and all the delays with his development, I just didn't know what he would be capable of. We noticed that he seemed to be able to recognize certain words whenever he saw them in books, on signs, etc., so we founds some special books that help with reading/phonics and we got them for him for Christmas. When we actually sat down with him to read them, I think we were expecting that he would have trouble, but he really did well and surprised us. He knows how to sound things out and put sounds together......I know this is all normal for most kids, but like I said before, we are never sure what "normal" things Brian will succeed in.....it really brought smiles to our faces and warmed our hearts with so much pride to hear him reading. Wow, what a long way he has come!
Well, I mentioned earlier something about Brian and glasses. Yes, he's wearing them now. We had him re-checked from one year ago, and this time, his vision had changed enough to need correction. He's still getting used to them, but we think it should help him more in school too. The first day he wore them, he got out of the car and looked down on the ground and said, "hey!! look at all those little rocks down there!" I remember thinking just about the same thing after I got my contacts......I didn't realize the detail I was missing in things til I had the correction. Anyway, not even two weeks later, we had an appt for Eric to have his eyes checked too and we were shocked to hear HE needed glasses too!! Apparently he has had some trouble seeing the chalkboard at school from the back of the class, but we had no idea. He was a little bummed about this, but we are glad to know about this early so he doesn't get into trouble by missing things that he should be seeing. I think it helps that Brian also just got glasses, and it also helps that he only needs them at school or to watch TV/movies. His glasses are ordered but not in yet. When they are, I will get a shot with both boys in their new "accessories" and put it on the photo page too.
So, I think that brings me to the end of this update. I hope that the holidays were as nice as could be for you all......I say that knowing that some of my JMML "family" have had a rough patch lately and are certainly on a roller coaster ride......one that I am all too familiar with. I wish there was something I could do or say to make it better for you, but I will just be here if you need me and send my best thoughts and prayers. Keep your hope and faith alive. Just take it one day at a time, and know you are never alone! To everyone else, I send my best wishes as well for a Happy New Year.
Warmly,
Niki
Saturday, November 02, 2002 at 05:00 PM (CST)
Hello everyone,
Well, Halloween is gone and Thanksgiving is on it's way.....................but Halloween was a brrrrrrrrrr cold one!! It was Jeffs turn to take the kids out this year, so I got the warm inside duty! It was short and "sweet", but the boys had fun. Eric went as a Colorado Rockies baseball player and Brian was, what else?............a dinosaur!! He wanted, specifically, to be a Parasauralophus, but that's a tough costume to find (I would have had to MAKE it!!........heavens, no!), so we went out to look and there was a stegosaurus that he got excited about. Yea! Thank goodness, and they were on sale 15% off, so even better! Plus, it's a little big on him so he can wear it AGAIN!! He even asked me if he can wear it again next year, and I said, "oh sure honey"!!, thinking all the while, "you WILL be wearing this again!" hee hee. Anyway, I took photos (still not digital) so as soon as I get them developed, I'll put them on the website. Speaking of cameras........we are researching digital cameras. We are planning on buying one by/for Christmas. If you all have do's and dont's or advice on cameras or just love or hate one you have, let me know your thoughts. Thanks.
So, anyway, on to news. Brian had his scope on the 18th of Oct. He did pretty well.....didn't like the mask over his face to put him to sleep, but otherwise he was ok. When he came home, he was still a little "drunk" from the versed and kept walking around all silly saying "I'm a little wobbly". He thought that was sooooo funny! I was just worried he was going to fall and get hurt! Anyway, they had a hard time getting the scope down Brians esophogus because he had a stricture. It was so tight and closed up that they couldn't even get the neonatal scope past it (which is .8mm)! Once they dialated him a little, they could get it through, then the pediatric scope and the balloon to stretch it open more. They did biopsies, and those came back virtually fine. No GVH or anything else.......except some mild signs still of an allergic process. So, they want us to continue to keep him on a milk protein-free diet. They also wanted us to follow up the scope with an esophogram about 10 days after the scope to see if the esophogus was still open or to see if it had begun to close up again. We did that and it is still open. We need to repeat it again in three months, or sooner if Brian seems to be complaining of discomfort with swallowing, etc. In the meantime, they want us to get him eating by mouth again. He has gained back 3 of the 4 lbs he had lost over the summer which is good, but he will probably lose it again when we start this whole thing again. I don't know how we are going to do it this time.......he is not interested in eating now, and fusses through the little bit we are giving him right now. We've begun to wonder if it might not be time to try a big feeding institute somewhere that specializes in this kind of thing, even more than what we are getting here. It's kind of scary, but we've GOT to do something to get him moving in to the "real world" of eating.......I worry that his growth will be stunted permanently, not to mention all the social issues of not eating and doing things like most other kids around him. Let's see.....other stuff......we have Brians IEP scheduled for next week and I'm hoping to get some help for him in all the areas that he is lacking, as well as help with carrying out our feeding plans at school. Brian also had his visit to the dental clinic where all looks well with his teeth.......a special hello to the ladies in the dental office who are really fond of Brian.......they added his website to their favorites so they can keep up with how he's doing.....they wanted to see his halloween costume too, so I told them to check back soon for photos.
As for other stuff around here.....We had Jeffs brother and his wife here for a visit. It was short, but we all had a really nice time together. We had some good laughs and even got out for an adults only dinner (thanks Whitney!!). There were six kids in Jeffs family. These two are 4 yrs apart, but they are SOOOO much alike, it's almost scary!! It was fun though too! Unfortunately, they had to leave before they could see Erics last football game of the season and it was a great game!! This was the championship game (although, we were the last placed team playing the 5th place team for LAST place!!). The first half his team was behind 13-6. He played defense and got a lot of "flags" for tackles. The second half the coach switched players around and had Eric at QB. Eric passed for two touchdowns and ran for two touchdowns, and carried the ball on every play but three, scoring 28 points in the second half! The final minute they were down by 5 points and he took them down the field to score in the last seconds to win with a final of 34-33!! His team was so excited they actually WON a game, it didn't matter to them that it was for 5th and 6th place! All the while, Eric played it very cool, like it was no big deal.....he was "just doing his job"! It was fun to watch. He didn't care that they didn't win all season.......he just liked going out and doing his best and having fun, and that's exactly what we emphasized to him.
Let's see, Jeffs neck is a little better it seems since his accident last July. Healing is slow, but it's not as bad. He bought a new truck this week......surprised me!! I didn't even know he was thinking about it! This one will work out better for all of our needs. Now we both have new cars..........that's a first! We won't be needing to buy a new vehicle now for a long time!! I had an MRI last week of my shoulder. There is no rotator cuff tear or anything, but it did show severe bursitis, which is basically what he thought was going on. I decided to have another cortisone injection since the last one was effective for several months, in hopes that perhaps one more will clear up the inflammation once and for all........I had that done on Wed this week but it takes up to a week or more to feel any relief........I'm still pretty uncomfortable right now, but I believe it's only temporary. It was almost 10 days last time before I felt better, so that's what I'm going on. I hope so anyway, cuz this is getting pretty old (or maybe it's ME that's getting old, huh? !!) That about catches us up for awhile.........my mom and dad are doing pretty good, and they are coming to visit the second week of Nov so my mom can get her post transplant check up. Hopefully, she will get the word that she is cancer free and can go on about her life again as best as possible. I'm not sure when I will write again, so if it is not until after the holidays, I'll send you all my best Thanksgiving wishes now.
Take care!!
Niki
Friday, October 11, 2002 at 09:57 PM (CDT)
Hello all...........Happy Fall !!
I am trying to update sooner than last time, so hopefully it won't be as long as it usually is.
My last update was the first day of school for the kids. We are now almost through the first semester and parent teacher conferences are next week. Brians school photos have already been done and I posted it both on the webpage and the yahoo photo page linked at the bottom of his website. Erics photos were yesterday so those won't be up for a few weeks yet.......check back later for his. Things have gone well for both of them except in regards to Brians feeds.
He was doing really well the first couple of weeks with eating his "mush" at school (rice cereal with some flavor of baby food). We sent it to school all mixed up and he would eat it down in 10-15 mins all by himself. Then he got to where he was only eating about half, then none. This came at the same time that he seemed to have a virus/allergies/GI bug or something, so it made sense that he wouldn't eat as well if he didn't feel well. But, the whole oral feeding thing became a real struggle and very negative. We had a huge meeting between the school nurse, OT, ST, teacher and the feeding clinics OT, and psychologist to determine the best course of action for Brian. At that time it was decided to give Brians gut a break from the feeds and the negative environment of pressuring him to eat and we went back to full time g-tube feeds only. It's been about a month and he has gained back 2 of the 4 lbs he lost when we went to oral feeds only. After giving him a break from oral feeds for almost 2 wks, we tried to go back to them, but now he was complaining of his mouth hurting, throat hurting, stomach hurting and just did not like the taste of any of it. We don't know if this is truly physical or psychological. We probably need to go back to the beginning and do the intensive feeding therapy again, but first the GI doc feels it is time to see what is really going on in his gut. It has been over a year since his last endoscopy and it will tell us, hopefully, once and for all, what we are dealing with. It might be that he still has severe allergic esophogitis........a reaction from something he is getting that he is allergic to that causes such severe erosion that it looks like patients with anorexia, OR perhaps, his gut looks totally normal, and then we know we need to work more on psychological or behavioral stuff to get him eating. We may have to then get really serious and go to Baltimore or Atlanta to this really big feeding intitute. He is scheduled for the scope next week. It is pretty minor........they will do it in the GI lab........most kids just get a little sedation......don't know if he will get that or something more, but they have their own anesthesiologist, and Jeff knows him, so we trust that they will do whatever is best. The scope takes about 5 min, so this is a quick procedure. This is the first thing he has had done though in A LONG time, and now he is a child who knows and understands enough to be fearful, so I don't know how he will do going in.......he seems to do best with Jeff though in situations like this, so I think he will take him in for this. I'll let you know what they find as soon as I can.
Eric is finishing up flag football. His team pretty much stinks, but individually, he has done pretty good. I know he would like to be winning, but at least he is still having fun.
My mom had her transplant on Sept 21st, and initially did pretty good. Then the chemo effects hit and really knocked her down. The nausea and vomiting and diarrhea were the worst of it I think, and the meds that she was taking for pain and discomfort really had her in a fog.......it was hard for me to see her like that......it was like it wasn't her at all......in fact, in many ways, she looked and acted just like my grandmother (her mom).........it was scary. Something like 17 days after her transplant, she was on the road back home to Colorado!! Incredible!! After more time and recovery (not without some problems still), she is really doing so much better! She is finally able to eat again, without nausea......the other end isn't 100% yet, but much better than before, and talking to her on the phone now, she sounds much more like herself again. She still gets fatigued, which is normal, but that is better too. She has a follow up with the transplant doc/team here in Nov, so I will get to see her/them again soon. My dad had his stress test recheck and passed with flying colors, so they are both on the mend and have started a training/workout program to help them become stronger and in better shape. I am looking forward to having a much more pleasant visit with them when they come next month........much less stressful and more comfortable circumstances!
We also have company coming next week.........Jeff's brother Chuck and sister in law Kathy are coming up from Texas to visit. They can only stay for a couple of days, but we are looking forward to seeing them. We even got a babysitter so we could all go out one night for an adults only dinner! That should be nice.
Let's see, what else?? Oh, we finally got our new minivan on Saturday........the one we ordered back in Feb of 2001?? you know, the one we had to cancel because the contractor we hired to finish our basement ripped us off?? where the money we were going to use to buy the new van had to be used to hire someone ELSE to finish the job that we already paid to have done?? It took over a year, but we ordered again, and this time we got it. I love it and it drives so nice.......and we have lots more room. I loved my car before, but with two kids and their friends or car pool, there just wasn't room...........it will make our driving vacations much nicer too.
I have been busy with home decorating too........the boys decided they wanted to sleep in the same room......so, we got bunk beds, and before we set them up, I repainted Brians room and we set them up in there. Now Erics old room is a "play room"......with a desk, toy chest, book shelf/reading area and TV/VCR. It all looks pretty good, but it was a lot of work.
Jeff is still struggling a bit with his neck pain from that car accident back in July. He is still getting treatment for it.......some days are ok, others not so good. My wrist got better after cortisone injection, but now my shoulder is giving me problems again........I've been doing P.T., but am at a point where I can't go any further without it causing me more pain, so it's time to go back to the doc........my choices will be to get an MRI or another injection.......I think first I will opt for the MRI to see if perhaps there is something going on in there that is causing all the inflammation.......regardless of what that shows though, I may need another injection anyway. We'll see. It's certainly not as bad as it was back in June.......I can use it, but it's just not as strong as it should be and aches a lot. Hopefully, whatever is going on will get better soon. I know things could always be worse, but, I'd like to get back to full time use without pain if I can.
Well, I think that covers everything more or less. I've probably forgotten something......if so, it'll just have to wait til the update after Brians scope I guess. I hope all is well with you all........love hearing from you, so write when you can.
Take care,
Niki
Monday, August 19, 2002 at 08:35 PM (CDT)
Hello everyone........yes, I am FINALLY writing........I know......your jaw is dropping, you can't believe it......what can I say? It's been an extremely busy summer, but I'm happy to say that it was a good summer and I have lots of good news to report........and yes, Thu (smart aleck!), it might just be a ten page update......afterall, it's been 4 or 5 mos since the last one and I have a lot to catch up on! So, please bear with me as I report the latest. I keep saying I won't wait so long to do this, but SOMEthing is always keeping me from it!
I hope that the past few months have been good for you all.
First, I will apologize for being so delayed in writing. Between summer vacations, Erics baseball, tennis, and swimming, and Brians feeding clinic, computer problems and my moms myeloma treatment, I just haven't had enough time to sit and write. Plus, I always like to have new photos on the photopage before I send it out, which requires developing, scanning, loading.......I know, I know, a digital camera would make this all so much easier......just one more thing to add to our list of "things to do"! Before I forget, I spent the majority of the afternoon setting up a photo page on yahoo photos so that we could share more photos with you than the three that the website holds. If you want to see them, either click on the link on Brians webpage, or click here: http://photos.yahoo.com/bc/sunflower32161/lst?.dir=/My+Photos&.view=t
I loaded lots of photos, from Brians birth to todays first day of school photo, so you can see the many changes over the past 6 years........yes, this Saturday, our little Brian, will turn 6. He's come a long way for someone whose life expectancy was supposed to be 9 mos. The first four of those years were pretty bad and wreaked havoc on all of our lives. The past two have been much better and have been filled with more in the way of progress and recovery. It's nice to finally be experiencing more of the normal every day childhood ups and downs. I hope that members of our "JMML family" will get through their treatments and experience these same kinds of "normals" again very soon too. It's a tough road.
So, now, the latest with Brian. The majority of July was spent with Brian at the feeding clinic. We had to go for breakfast and lunch every day for almost two weeks. The first day, Brian ate about 6 oz of food in about 8 min! I was shocked! It normally took us about 30 min to get him to eat maybe 1-2 oz before, with a lot of prodding! We found that he did well with distraction, so in the beginning, we had to let him look at books and read while we fed him. It took his mind off the act of eating and gagging. It was a lot of work, but today, 6 wks later, he is eating about 4 oz of rice cereal mixed with 2 oz of jar baby food. He is getting all of his calories during the day by mouth, along with bolus' of water for hydration. (Next we need to get him to start drinking more by mouth so we can discontinue the feeding pump altogether!) He gets one bolus feed at night with formula to supplement extra calories and vitamins and minerals that he doesn't get from the cereal and jar food. When we started this, his weight was about 38 lbs; now he is around 34 lbs. They don't want him to go any lower than this, so we are really trying to find ways to get more calories in him as well as more protein. It's all a balancing act, but he has made such progress, I can't get too frustrated with all the details that drag things along sometimes.
Everything else is really good. His speech is continuing to improve. He has a new favorite show called "Zaboomafoo" on PBS. It's about two brothers and their lemur friend who learn about and teach about all kinds of animal life and nature. Only problem now is that since he started all day kindergarten, he will miss it all week and only get to see one episode on Saturdays! I don't think he will like that! Oh well!
We had our summer vacation in June. We went to Chicago and visited with one of Jeffs brothers and his family first. While there, he and Jeff and Eric went to a Cubs game. We also went to the Shedd Aquarium in Chicago and the kids loved that......especially Brian. He is so into all kinds of animals and his favorite shark is the hammerhead......they didn't have one, but had a family member of it called the Bonnethead shark. He was happy with that! After a few days in Chicago, we headed up to the Milwaukee area to see Brians bone marrow/stem cell donor Mark, and his wife Gina. The guys &B Eric went to a Brewers game one night, and the next day we went to the Milwaukee zoo (zoos happen to be Brians favorite places to go!!). It was probably one of the best all around zoos we have ever been to. The bonus for us, that day, was that they had this special Dinosaur exhibit with life size, robotic type dinos with sound and movement, surrounded in a natural setting. It was the highlight for Brian since he is so into dinosaurs right now. The weather was perfect while we were there and we had a great day. The ironic thing, and it wasn't planned, was that the date, June 6th, was the 5 yr anniversary date of Brians first transplant. If you had told me five years before, that I would be strolling along on a beautiful day at the Milwaukee zoo with Brians donor and his wife, I would have said, "yea, nice dream!". We couldn't have planned it better. It was great to see Mark and Gina and spend some time with them. I think that it was good for them to see Brian too, with all the changes and progress he had made since they saw him two years before. I added photos of them and also them with Brian and his favorite dino (triceratops) on the yahoo photo page.
It was a very busy summer for Eric mostly with baseball. He also played some tennis and had swimming lessons too, but mostly it was a baseball summer. His little league team played 20 games in 10 wks. He did really well, even though, overall, his team didn't. After the season was done, he was selected as an all star, and went on to play in the All star game, which meant two more weeks of very serious baseball. He moved up and played with the 8 yrs olds. He did pretty good and his team took second place in the championship! Now he is on to pee wee flag football. His first game was yesterday. They lost 35-28, but he scored one of the touchdowns and had an interception. It was fun and one of his friends from school (and baseball) is on his team with him.
Both boys started school today......Eric in 2nd grade and Brian is in Kindergarten now. Because he has special needs, he goes to a different school than Eric, and the bus came to pick him up at 8:00 am. That was early for him, considering we had to get him up at 6:30am so he could get dressed, fed and his pump before he left. Plus, he goes all day now, so it makes for a long day for him. The teacher called tonight and said he did great with everything......he even takes his little container of baby food in a lunch box and he ate it all by himself in the cafeteria!! They said he was done before some of the other kids! (now why do we have to prod him so much at home to do it and he just breezed through it without a single fuss or whine at school?? hrrmmph!) He's getting to be such a big boy!
Well, that just leaves me and Jeff......what can I say? We are surviving...... We celebrated our 17th wedding anniversary inJune. Jeff had a car accident where someone rear ended him. $3000 worth of damage, being without his truck for 10 days, and now recovering from the neck/back/headache pain with help from meds and P.T. He's doing better, but it sure is a pain and a hassle to go through all that. I am doing ok, but have been bothered by a left shoulder injury since June. I had it injected with cortisone which helped a lot, but it is starting to come back now. Then about a month ago, my right wrist started giving me trouble too.........swollen, carpal tunnel/tendonitis symptoms.......(one of the reasons why I haven't been able to do much computer work!) after meds and a brace and O.T. didn't seem to help, I had that injected with cortisone too! It's doing a lot better as well, but neither is 100%. It has been a major nuisance, affecting not only my working out/weight training, but my every day chores/responsibilities too. Is this just the beginning of the aging process?? ughh! I'm not liking it very much if it is!
The only other news I have is about my mom. She finished up her five rounds of chemo in Colorado and headed here to Omaha the third week of July to prepare for her autologous stem cell transplant at the University of Nebraska Medical Center. It's the same place Brian had his transplants. She got her new central line, got a dose of cytoxin, about 6 days of growth factor shots, then harvested her stem cells last Mon. (they got 7 times the amount they needed!) She started high dose chemo last Thurs, to wipe out her entire immune system, and she finishes that tomorrow morning. Wed she will get her stem cells back and then the waiting game starts to see if/when they engraft and bring her WBC back. They expect the transplant day to be a long, tough, difficult day and plan on sedating her for that, and the next few weeks may begin to get pretty tough on her. I hope that it all goes as well as the rest of her treatment has gone.......she has done remarkably well. Say a little prayer, or light a candle or think some positive thoughts for her, ok? We also have a little JMML buddy, Colby, who is having his stem cell transplant on the same day as my mom. I hope August 21st is a good day for transplants!! Go, cells, go!! Do your thing to help all of our loved ones!! Thanks for all of the good wishes for my mom. They are appreciated.
I think that covers everything. Hope it wasn't too terribly long. Thanks to you all for checking in and being patient with my delay. Write and let me know how you are doing too, or sign into Brians guestbook if you have time. Don't forget the photos. There are some great news ones.......the newer ones are on the second page of photos at yahoo.
Take care.
All the best,
Niki
Wednesday, May 15, 2002 at 06:43 PM (CDT)
******NEW UPDATE COMING!! SORRY IT'S SO LATE IN COMING......STAY TUNED....THANKS FOR BEING PATIENT!..08/15/02....NIKI *************
Happy Spring to you all,
Is it spring where you are?? I'm not sure what you'd call what we've been having.....fall, summer, winter all rolled into one season....but not a typical spring, that's for sure! (what would I know about what's typical for where we are now?....it's certainly not typical for what I think of when I think of spring!) Anyway, the long overdue update on Brian.....sorry it has taken me so long to get it out. It will be long, but there's lots to tell, so bare with me.
Where to start, huh? The last update I talked about weaning Brian off the hydrocortisone (steroids). He was only on a small dose to begin with. It was a replacement dose because his body was not making cortisol on it's own (from the long term high dose steroids in the past). When you don't make it yourself, you become adrenally insufficient.....this is not good, so that's why he needed to have it replaced. Well, we got him off the HC without any trouble, and after two weeks of being completely off of it, we had some labs drawn. This is done at 8 in the morning, with him being NPO and you do three separate pokes 5 min apart (he wasn't crazy about this, but he did REALLY well). This lab test was to check and see if he was making his own cortisol yet.....you can't make it if it's being replaced.....and there's no need to replace it if you are making it.....but you can't know what is happening without getting off of it to begin with....anyway, if the results are accurate, his cortisol level was normal!!! Did I say normal?? I had to ask them again.....does this mean he's making it on his own?....yes, they said.....I was so excited! This was such great news! But Jeff and I are still leary.....we worry that maybe it appears to be normal cuz maybe he still has HC in his system making it look like he's making it. What can we say? We don't want to be fooled too easily, so when Brian goes in next month for his oncology check up, we are going to have them draw appropriate labs again to check his cortisol level and growth hormones too. By then it will have been 7 wks that he has been completely off all HC, so we hope that it will be a truer measure.....does that make sense? The fact that Brian is beginning to finally grow makes it a little more believable, but we still want more proof! He is now up to 37" tall and 37-38 lbs. It's slow going, but at least he is growing!
Ok, that was the good news. The bad news, or things we still deal with are feeding issues and bone pain. First, the bone pain: We took him to see a pediatric rheumatologist. He decided to do a bone density scan to r/o osteoporosis. After being on high dose steroids all that time during transplant and treatment, it's one of the side effects. Since he has been off the high dose steroids for several years, and only on low dose steroids for the adrenal insufficiency, we thought his bones should be ok by now, but the scan showed his bone density to be very low.......saying he DOES have osteoporosis. They said his risk for bone fractures is VERY HIGH! Oh my goodness!! All this time he's been falling, bumping himself, etc. and we didn't know! However, the doc said osteoporosis alone does not cause the bone pain that he may be experiencing, but osteoporosis can cause microfractures, which would cause pain. We don't know if that is what has been happening to him all this time, but it's a very good possibility. We could find out for sure with high resolution MRIs or CTs but, there is nothing that we would do differently than what we are doing now, so it's really not neccessary. The pain could be coming from transplant too....nobody really knows.....they just know that lots of transplant patients have bone pain......and the main treatment for it is......STEROIDS!......so we don't want to go there. What we will be doing though is supplementing him with extra calcium and vitamin D. We will do this for 6 months and see if there is any improvement in the density of his bones at that time. We also have vioxx for him now for the days that he seems to be complaining more of pain. There are other treatments available for his osteoporosis, but this is the best option for now.
As for feeding......we are still so stuck in a rut it's not even funny. We are so frustrated. For now, we are seeing the behavioral psychologist again to work on compliance training (with his behavior) so that he will be more ready for an intensive feeding week in July. I really don't know what they do yet, but, Brian will be seeing them at breakfast and lunch every day for a week and doing some kind of eating with them. I have to find out more before then I guess. The thing is, he won't be very cooperative with them with this if he doesn't have some ground work layed out first in regards to any negative behavior.....i.e. saying "no, I don't want to eat" or just refusing to try things, etc., so we are working on that now. It's hard to explain, and like I said, I don't even completely understand it all myself yet. We'll see. What I'd rather do is just cut off all feeds, let him get hungry and thirsty (cuz he's not ever hungry or thirsty as long as he's getting fed every three hours!) and then let him eat or drink. But that's pretty drastic. I guess they will be incorporating some of that with the intensive feeding week....by cutting some of his feed/calories before we start that week. Arrrrgggghhhh.....why can't it just be easier??
Anyway, what else? Well, one other good thing is that he is all caught up on all his immunizations....FINALLY! Remember, what he had before his first transplant was wiped out with the chemo and transplant, and then there was no point (and his immune system was vulnerable too) in giving him any until he was well enough and had a normal immune system again. So, over the past year or so, he has gotten everything that a child normally gets in their first five years. Now, in June, he will get his kindergarten physical (YES, KINDERGARTEN!, can you believe it??) and the immunizations that all the other kindergarteners get too. Ahhhhh, to be on track with something for once.....what a concept! As I mentioned earlier, Brian will see the oncologist onJune 11th for follow up exam and labs. The appt date is the 3 yr anniversary since his second transplant.....whoa!! Gives me goosebumps to think about it......hard to believe it's been three years.....and FIVE years (on June 6th) since his first transplant. Boy, has he come a long way. Sometimes it seems like yesterday.....but mostly, it feels like a lifetime ago. I am in touch with several new families whose children have JMML, and although it is rewarding to know that I can be of support to them, it saddens me more that there continue to be more children diagnosed with this "rare" form of leukemia........I wonder how rare it can really be now with so many newly diagnosed. The good news, if there can be any in all this, is that these kids (the majority of them) are doing FAR better than Brian did with their treatments/transplants. I hope that is because five years time has brought about more options/research/answers than what we had. I know that every case is different, even with the same diagnosis, but I am happy to see that whatever the reason, these kids are doing a lot better with it than those in the past. I wish them all (Zachary, Luke, Kayli, Cindy, Colby, Esperanza, Jacob and Libbie), and all those I don't know about, all the best as they struggle and progress in their disease and recovery. My hope for them all is that they will be where Brian is today as far as the leukemia goes.......with no evidence of leukemia cells and re-defining what "normal" is in their lives.
Now, for non-medical things; Brians preschool class did their annual circus again. They perform for the K-6 classes in their school one day, and the parents/families the next. This year Brian was an amazing acrobat and a prancing pony! I scanned a pic of him as the pony and put it on the website for you all to see. School has gone really well for him this year and he has progressed so much since the beginning of the year. We have gotten the approval needed for him to remain in the same school next year (it's not our home neighborhood school) for kindergarten and we are very happy about that. He will go all day, and he will have all the same support he had before.......physical therapy, occupational therapy, speech/language therapy and now he will also work with the resource teacher (who will take him out of class as often as needed to help with the things he is still behind on). There are three other kids from his preschool class also joining him in this class, so at least he will know a few kids, and it is in the room right next door to his preschool class, so he will know his way around already. There will be a lot more "regular" kids in his class than he has now (many special needs kids where he is now), so I think that will help to socialize him even more. We'll see, but we are very hopeful and excited about what changes the next year will bring him. It's amazing what he does and knows now. I've been working with him a lot to have him more ready.....he knows his last name now (and how to spell it) and phone number, city and state, although those don't come as easily for him as his name and number......(funny story though, when we first asked him if he knew what town he lived in, he said, "Busytown"!! ha ha ha)
He knows all of our names and how to spell them and how old we all are. There are still some things he has a hard time saying, but with correction, he eventually gets most of them. It's like, he can't say lion (it sounds like y-eee) or water (sounds like la-wer), but one day at the dinner table he spits out "anesthesia" after Jeff said it!! Go figure! He can write all his letters and numbers now too, but now we are working on getting him to write them all in the space provided on grade school paper, you know? His tend to be big and little and out of place and all over the page! No different really than most kids when they learn, so with time and practice, he will get it too. He is really into being outside again, and he's taken an interest in many of the things that Eric was so interested in growing up with too, like dinosaurs, whales and animals in general. He knows the names of most of the dinosaurs......another go figure.....he can say "parasauralophus, triceratops and brachiosaurus", but not Brian......!! He can peddle his trike, handle the stairs, catch and kick a ball......so much progress in the last year it's incredible! Even though we still struggle with a few things with him, we are so very grateful for all the progress that he has made. It could aways be worse, so we will enjoy what we have now and keep working hard to keep making progress in the future.
Well, this has gone on long enough. Briefly, I will mention the rest of us......Eric is Eric......still a wonderful kid! He's so smart.....in first grade, but in challenge reading, writing and math (he's doing multiplication and division on his own!.....he loves math!), he's physically talented and coordinated and doing a great job in baseball, he's loved by all his classmates and friends and very kind and helpful to them all......what can I say? He's what every parent wants in their kid.......sometimes I think, "how could we be so lucky?" when I think of him.....my dad had an answer to that question......he said, "maybe it's Eric that makes up for all the difficulties and hard times that have come with Brian"........Wow! How true. Thanks Dad! Of course, Brian is a joy too, but nothing has ever been easy for/with him like it has been for/with Eric.
Jeff and I are doing ok.....getting busier with the good weather.....house/yard projects, Erics little league, and vacations......we had our trip to Texas over spring break. It was a good trip, and good to see family and friends.....not enough time to see everyone we wanted to, but we did pretty good. Jeff and Eric went to a Texas Rangers game, we made it to the Dallas zoo, and we were extremely overwhelmed with the growth of the Dallas area! Holy cow! Growth can be good, but MAN! that is too much there!! Boy are we glad we don't live there anymore! Miss the friends and family, but not the place!! The kids have three more weeks of school and then we leave on our next vacation.....this trip to Chicago (one of Jeffs brothers lives there and he and his family have never met the boys) and then the Milwaukee area to visit with Brians donor Mark, and his wife Gina. We are looking forward to seeing them too. It's been two years since they came through Evergreen to see us. We have tickets to see the Cubs play in Chicago and the Brewers in Milwaukee, so Eric continues on his trek to seeing all the major league ball parks (of course, he saw the Rockies when we lived in Colorado, then the Mariners when we went to Seattle last year and the Rangers last month)! We only live about 2 1/2 hrs from Kansas City, so maybe we'll have to take a short trip down there to get him to a Royals game sometime. We plan on trying to see some of the other cool things in Chicago while we are there too, but mostly this trip is for the boys to see and meet people, now that we are able to get out and travel. We were talking about going to Florida in August, but there are other things going on now in our life that are more important and that we want to be here for, so that trip will be planned for next year instead.
Which brings me to the last bit of news here.....it's part of the reason I have been delayed in sending out an update (along with pc problems, vacation and just busy life in general!). I normally just write about Brian, and a little about us, but this time I want to tell you about my mom. Many of you actually know her, or have met her. Some of you don't know her at all, but if there is one thing I have learned from this new world of email/internet connection, it is that it has been a great way of connecting people who might not otherwise be connected. It has been a great means of research on subjects that are hard to understand. You meet and communicate with people everyday and you never know what they know, where they've been, what they've been through sometimes, unless you open the door to them and share......so that is what I am doing. You'd think that this family had been through more than enough dealing with a child with cancer. It affected not just us, but everyone we are close to as well. My parents really got a big taste of the cancer life with Brian.....he is their grandson, yes, but, they also left their nice, cozy, comfortable retired life to help support us during Brians first transplant. They moved to Omaha with us, stayed in a two bedroom apartment with us, did their fair share of long hours at the hospital to give us breaks, and were the major support system to a then 2 yr old Eric. This was for four months....FOUR months of what should have been the easy life of retirement, not to mention the month before and the month after the transplant with us in Colorado. I never knew how we could ever "re-pay" them for their support and love during that time. I never really knew how hard it was for them emotionally until later. I know that this is the kind of thing that you can never really pay back, but if you could, we are getting our chance now. You see, my mom was diagnosed last fall with multiple myeloma......another type of cancer that affects the bone marrow. Like Brians type of leukemia, it also has no cure. There are many options for treatment to try and put it into a "remission", but so far, there is nothing out there that will definitely cure it. One of the options...one of the more aggressive options, is a bone marrow transplant. She wants to be aggressive with this and is currently undergoing the third of four rounds of chemotherapy to put the disease into a temporary remission. This will hopefully make her as "clean" or free of the cancer as possible so that the marrow they harvest from her can be treated and infused back into her (this is a stem cell transplant where you collect your own cells to transplant back to you later, instead of like Brians where he had cells come from someone else). She is doing really well so far and has had very little in the way of complications (thank Goodness!!). If all goes well, she should be ready to come to Omaha to the University of Nebraska Medical Center for transplant in July, I think. It's ironic that they are coming back to the same place that Brian had his transplants too, but they are familiar with the set up and people and have great faith in the program. Also ironic that it is the same place Dad went to medical school so many years ago.
So, we will be here for them now. It's our turn to take care of them. I look forward to the close time we will surely share, but I hope it goes witout too many complications.....unfortunately, I know too much about transplant and all it involves, and I hate to see anyone else go through that.....especially my mom. But, we all feel like it's the best shot for her to try and cure her and give her many good, healthy years to come. I hope it goes as well as her preliminary treatment has gone. She has a great attitude and a strong spirit that carries her through.....and the best thing she has going for her is the unlimited care, love and support from my dad. They are an awesome team. If we could all be so lucky to have someone so devoted to us as they are to each other..........then we'd really have it all!!
So, I tell you this because there may be someone out there who knows someone else going through this, or who has gone through this disease themselves. Or maybe you know of a great service, or support group that would be helpful to her. I don't know what it might be, but if there is anything or anyone out there who might have anything helpful, it would be greatly appreciated. You can let me know, or send her a note if you'd like through the website I set up for her at http://www.caringbridge.com/co/greeklady/index.htm . Strangly enough, one of the families I know who has a child with JMML (like Brian) has an uncle with MM too.....I never would have known unless we had talked about it, and now, maybe, they can hook up and talk or compare notes. I thank you in advance for anything you may have to share. Thank you too for listening and staying with this very long update!
I hope you are all well and that you enjoy the upcoming summer (or winter for my friends in South Africa and Australia)! As always, I love hearing from you all when you have time to write. Take care until I hear from you again.
All the best,
Niki
Wednesday, March 06, 2002 at 07:14 PM (CST)
Hello,
Well, let me see. After I wrote last, Brian got another ear infection and actually had a low grade temp for a few days. I kept him out of school. He didn't seem to care. Then, a week ago, he got this terrible GI bug that is going around and had diarrhea, wretching and gagging (which I'm sure would have been vomiting if he didn't have that Nissen!) and feeling so bad he must have napped about 4 times a day, poor thing!! He got better but then he passed it onto Jeff and then me!! There should be a rule against parents BOTH being that sick at the SAME time!! Who is supposed to take care of everyone when both caretakers are down!!? Somehow, we managed, but it was not easy OR fun! Eric bypassed that illness, fortunately, but did get another ear infection. We are all much better now. Jeff is having his sinus surgery tomorrow, so we just have to get him through that and then hopefully, everyone will be feeling good and healthy and pain-free for a long time!
Brian went in for labs and to see the oncologist on the 19th and he did very well. His oncology labs look good, except his hemaglobin is high again (15). His pulse ox was 98% though, so it shouldn't be oxygen related. It could just be Brians new normal??
He will see oncology again in June.....that will be 3 yrs since his last tranpslant....WOW! I talked wtih Dr. Grovas (the onc.) about the possibility of Brians need for growth hormone in the future, and he said he thought that was fine, to go for it. He did not feel that Brian was at any higher risk for relapse from taking it, and that if the endocrinologist feels it's best for growth, he is ok with it. He definitely put my mind at ease about the concern of relapse on growth hormones. So, now, we just have to wait til Brians hydrocortisone dose is weaned off, get a height and weight again and see what the endocrinologist decides to do based on the results. We did get the results back of the TSH, free T4 and IGF-1.......all were normal. His bone age study was amazingly close to normal.....at a chronological age of 5 yrs, 6 mos, it read out at 5yrs, 2 mos!!!! They consider that normal. So, his lack of growth probably has nothing to do with his growth hormone......it is probably from something else......we probably won't know for sure unless we can do a hormone stimulating test though, and that will be decided after we see how he looks in June.
A few things that I forgot on the last update (it was already so long, how could I possibly have added anything else?!!)......
I forgot to tell you that Brian is potty trained now.....he uses a pull up at night because he doesn't wake up to go yet, but otherwise, he is completely potty trained! He is also writing and spelling words.....he can write his name (it's sort of all over the page, but, he still does it and spells it right!), and almost all of the letters of the alphabet.....the only ones he has trouble with are the slanted lines, like in x, y, v, upper case X, Y, Z......interestingly, he can do W though...he can write some of the numbers. It's amazing how smart he is ! He has also done great with the transition from crib to toddler bed........only problem is, he still won't get out of bed on his own...!!! He is so conditioned to staying there til we come in and get him up and dressed, he thinks that's what he's supposed to do! Oh well.....he'll figure it out eventually! In the meantime, he just hangs out in his bed singing and talking to himself, or saying his abc's until we come in! Sometimes, Eric goes in and reads to him til we are up too! ......he's a sweet kid, and it's better than having him screaming in there to get out or having him getting up and getting into things he shouldn't, so, I won't complain!
I have been helping out in Erics class once a week with their writers workshop. It's fun for me, and a good way to get to know the other kids in his class. Teachers are incredibly special people though, and I bow down to them for all they have to do every day with our kids. They definitely don't get paid enough!
I also forgot to mention that we had a very special visit from some friends we met during Brians second transplant. Their son, Joshua, had a liver transplant from a living donor.....partial liver from his dad!! We have tried to stay in touch over the past couple of years, and they were in town for a check up so we had them (along with the rest of their growing family ...Samuel and now Grace) over for pizza and play-time! It was great to see them and catch up. Brian really liked it and LOVED the baby! He's really into babies right now! Anyway, Mike and Allyson have an amazing family who manage to come through every roadblock they face with such strength and love. I have to say that meeting and finding new friends who have gone through similar battles with their own children, is one of the good things to come from cancer. Those bonds are strong and true gifts. I'm glad it worked out for us to get together this time (thanks Mike and Allyson for coming by!)
Well, I think that catches us up for awhile. We are getting ready for our first vacation of the year over spring break. This trip is the one to Texas......hope it's going to be warm. Eric and Jeff are going to catch a Rangers game while they are there, and it will be good to see friends and family again (Jeff and Eric have been there a couple times in the last few years, but I haven't seen everyone since we lived there over 10 yrs ago!). After that trip, we will head to Chicago and Milwaukee when school is out......I imagine, unless there is something worthwhile to report, that I won't update til after we see oncology and endocrine in June, so everyone take good care, and stay in touch .......Even if I am not writing updates as often, I still want to hear how you all are doing too.
All the best!
Niki
Tuesday February 12, 2002 9:35 AM CST
Happy New Year, Happy Groundhogs Day, Happy Valentines Day and anything else I've missed since our last update!! I hope this finds you all well and happy. It seems that the updates get spaced out farther and farther apart now as Brians news and needs become less and less. I think that is a good thing, don't you? Before I get into the latest details of Brians and our life, I will remind you of our new email address again. It is ndaubach@cox.net . I think most of you got it changed when I sent out a notice, but I still have a few people sending to the @home address. Although I can access that address right now, I will not be able to after the 24th of Feb.
When I last wrote, we were trying to relieve some pain for Brian with ibuprofin. It wasn't really helping, so the pediatrician recommended naproxen. His complaints were reduced considerably, but after 2 mos on the doseage he was on, he started complaining of abdominal pain and his g-tube hurt him and leaked a lot. At first we thought maybe his g-tube wasn't working properly, so we took him the pediatric surgeon to have him take a look at it. The balloon was still in tact and the size of the tube was correct. The stoma (the opening that the button goes in to his stomach) was fine too. Since it had been about 4 mos since the last g-button replacement, he thought we should just replace this one and hope that a new one would make a difference. It didn't. The leaking continued and so did the complaints. Jeff and I decided to check the new button ourselves to make sure it was ok, and it was, but Brian had some bleeding in and around the stoma. We thought about it and wondered if maybe the naproxen was just too hard on his stomach and causing all the pain. We discontinued it for a week and the bleeding and pain and leakage got a little better. We spoke to the pediatrician about it who is looking into another medication that helps with pain but is not so hard on the gut....in the meantime, he has cut the naproxen dose in half and we are trying that. Brian still complains a little about his g-button hurting and there is a little bit of leakage, but it's better than before, and the complaints of bone pain are a little better too......it's so hard to really know what helps and doesn't help, so it's always a lot of trial and error.
Brian saw the endocrinologist yesterday to evaluate his growth/short stature. He is going to want to do some hormone workups, but Brian needs to be weaned off of the hydrocortisone before they can do this. We will begin a slow wean today that will take 2 1/2 months to get him off the medicine. In the meantime, we will get some labwork and a bone age x-ray. This will help determine what type of hormone studies to get after the HC dose is weaned. We will have the labs and xrays done next week when Brian goes in for his oncology labs/visit next Tuesday. He will see the endocrinologist again in 3 mos and then he will be scheduled for the hormone studies.
Another factor in Brians lack of growth could be related to his nutrition as well. You know, several months ago we cut 20% of his calories in hopes of inducing enough hunger in him to make him want to "eat" something. It sort of worked enough to get him to try pureed baby food, but he doesn't take enough in to make up for the loss calories he got from the formula. We finally decided it was time to increase his feeds/calories again in hopes of his gaining back some of the weight he lost when we cut out a feed. (He is currently at 34-35 lbs and 36" in height at 5 1/2 yrs old--both in or below the 5th percentile) We started this on Friday and so far he is tolerating it. We went from 750 calories a day to 1040 calories a day. So far he is still eating the pureed baby food too, so that's good. He was on periactin to help induce hunger too, but, it didn't really seem to make enough of a difference, so we discontinued that. We will watch his weight over the next few weeks/month to see if the increase in calories helps him gain some weight. If he can tolerate it, we may even increase the calories again, but we'll just have to see how it goes. He did get another immunization last week (MMR) too, so we are down to the last two before he is caught up completely. So far he has handled them without complications. He actually looks forward to going to the doctors, if you can believe it! As long as he gets stickers when he is there, you could give him 10 shots and he would be fine. He cries when he gets the shots, but as soon as it's done he says, "that wasn't so bad......can I get a sticker now?" What a trooper!
He is still doing really well in school. He was recently approved for additional help in the speech and language therapy, so he will be getting more help than he was before. He is also being evaluated to determine placement for the next school year. It's looking very good for him to stay at his current school and getting his special needs met in the kindergarten program there. I wish that he was able and ready to go to school with Eric, but we all feel he would not do as well there yet. Someday they will go together. He is making a big move though.......we are transitioning him from his crib to a toddler bed. Jeff took off the side rail of his crib a couple of nights ago, and so far he has done ok with it. The first night, he kept asking Jeff to "pull up the rail!", but now he understands that it is gone. We put a small piece of lumber along the edge of the open side that is just high enough to "bump into" should he roll over in the night so he won't fall out. Brian got to decorate it with a million stickers to make it fun. He is so used to being "stuck" or "locked in" to his crib, he just stays there until we come in and get him in the morning.......even though he could get out by himself. We have a step stool next to the crib and we are trying to encourage him to get up by himself if he needs to use the potty at night or in the morning, but, so far, he just stays there. I know before long, he will "get it" though, and he will get up and come into our room at 5 am or something!! Either that or not staying in bed after we put him to bed! I think he will be ok though......both he and Eric have always been really good about going to bed (and staying there) and about getting up in the morning very happy and content. Lucky for us! No climbers or screamers! Anyway, once he does ok in the adjusted crib, we will switch him to the toddler bed and take the crib out of the room. One more hurdle cleared.
Let's see, as for the rest of us.........the weather and winter here this year has been a lot better than last year. We have had some snow and cold, but it has not been as extreme as it was last year. RSV was running around the community in Dec/Jan and I think Brian, Eric and Jeff all had it!! Fortunately for Brian, it wasn't as deadly as it once would have been for him........it just lingered on longer than a normal cold would have........he and Eric both had ear infections, and Jeff has been fighting sinus infections off and on. After Jeff had a CT done recently, we understand more why he hasn't ever been able to heal......his sinuses are impacted with nowhere to drain, so he is having sinus surgery again next month......I know he's not looking forward to it, but hopefully this time, he can get cleared up and stay that way with new treatment and meds. Somehow, I have been able to stay healthy (knock wood!!) and avoid all these nasty bugs and infections going around. I hope to keep it that way!
Our Christmas was very nice (other than the cold season starting on the guys about that time) and the boys had a blast this year. It was really fun seeing them opening presents and especially Brian as he finally understands what presents are and how much fun they can be! They both had music programs at school which were adorable. As for other celebrations, Eric had his 7th birthday in January with a party of 13 of his friends (at McDonalds, NOT here!!). It's hard to believe how fast he is growing up! He's getting rich off of the tooth fairy too as he grows up before our eyes. He is signed up for little league baseball now, and that starts up in March with practice and then the games begin in April. He has three of his buddies from school signed up on the same team, so that should be fun. He starts swimming lessons again this week too. He's not as thrilled about that, but, it has to be done!
We are planning some vacations for the spring and summer (something that is still kind of new to us now that Brian is finally getting better). Spring break will find us in Texas visiting family and friends, and as soon as school is out in May/June, we will be heading first to Chicago to see family there, and then to the Milwaukee area to visit Brians donor, Mark. We're not sure if it will work out yet, but if it does, we might also try to hit Orlando in the latter part of the summer. Jeff has some conventions there, so if we can get a good airfare for the rest of us, we will try to tie it into a whole family trip. I think the whole Disney/Universal Studios/Sea World stuff would be a lot of fun for the boys. I think you could take Brian to the Nick Jr studio or the Disney Channel studio and he would be in heaven on earth!! We'll have to see. If it doesn't work this year, we will definitely try it next year. Brian has a wish coming from the Make-a-wish foundation, and we know we could sort of make the wish for him to do that trip, but, we feel very strongly about waiting on wish making until HE can be the one to really understand what it is and decide on the wish HIMSELF. Who knows what it would be, but it should be what HE really wants, not what we think he might want.
Anyway, I think that catches us up. I will probably provide a mini update in a couple of weeks when I get the results back from the endocrine labwork and bone age study, and I can include Brians oncology news at that time too. Until then, I hope you all are fine. I think of you all often, look forward to hearing from you and staying in touch with your lives as well. Check the website for new photos. There are some from Brians Christmas program and Erics birthday party. Take care!
All the best,
Niki
Friday, December 21, 2001 at 11:25 PM (CST)
HAPPY HOLIDAYS EVERYONE!!
I hope this finds you all happy and healthy and enjoying the holidays however you celebrate at this time of year. In light of what happened in our country only a few short months ago, this year may be different for most of us as we re-evaluate what is really important to us during the season of giving.
Let's see........it's been since October since our last update, so there will be a lot to catch up on.
The last time I wrote Brian was just about to see the oncologist again for his every 3 mos check up. All went well; labs were fine. Nothing really significant to report there. Brian is doing really well in most areas of his life, but complains a lot of pain everywhere......mostly his bones, and not neccessarily when he bumps himself or something.......nobody is really sure what is causing this, but we had read before he even went through transplant, that many transplant patients complain of bone pain afterwards. The oncologist said that what they would usually give to treat the pain is steroids, and we really don't want to go there anymore if we don't have to, so, for now, we will just give him ibuprofin as needed. Nothing stops him from doing the things he wants to do or likes to do, but a day does not go by without him talking about something hurting......it's hard to really know since he cannot be more specific about the kind of pain. We just try to validate his feelings and "rub the pain away".........and he seems satisfied with that, so we'll just keep an eye on him and do what we can to make him comfortable until we know more what he is going through. He will see the oncologist again at the end of February. He saw an eye doctor for the first time ever in November. He has slight farsightedness, but not enough to need correction at this point. He will see the endocrinologist in February for another work up to check on his growth (or lack thereof) and see how he is doing with his adrenal insufficiency. I'm a little worried that he is not showing more progress with is growth, but, I am pretty sure it is also related to his nutrition. We are kind of stuck at a plateau with his feeds. We cut back on his feeds to try to allow him to feel more hunger, but he lost weight. He did seem to want to eat more by mouth (baby food) initially, but then it sort of dropped off. He still doesn't drink enough, and the baby food that he does eat is not enough to make up for the calories that he gets from his formula. If we increase his formula to give him more calories to help him grow more, he gets gaggy and can't handle it and it makes him too full to be hungry enough to want anything by mouth......it's definitely a catch 22 sort of thing, and until we can figure out how to teach him to eat thicker food and more solid textures, we are stuck. It has become partly psychological for him because he freaks out whenever something solid breaks off in his mouth. He gags and chokes and acts like it's not supposed to be there, and he doesn't know what to do with it even if we could convince him that it was ok. He doesn't know the process of biting, chewing to break it down enough to swalllow and then swallowing it. How do you teach that?? We have consulted with the feeding team again and they will be working with him and his therapists at school after the first of the year to see what we can do. He has come such a long way, but it is frustrating at the same time that he is not farther along with this feeding problem. Just like everything else, we have to keep taking it one day at a time though. He is on a new medicine to help increase his appetite though, called periactin. It's really an old antihistimine, but it was found to increase the appetite and is used more now for that purpose. It seems to be helping a little for Brian, but time will still tell. We just doubled the original dose, so we will see if that makes any more of a difference. He was taken off a few more of his other meds though, so the list continues to dwindle down of what he needs to take.
He is doing very well in school. His recent tests show that he is about 2 yrs behind in some of his development (gross motor and fine motor skills), BUT the tests for his mental capacity show him to be only 4 months behind his actual age......so that is great!! He is talking up a storm and it's hard to believe that one year ago we were praying for him to talk at all, so, it's amazing what can happen in just a year. He does have some delays and problems with some of his speech and language skills so they have done some testing that has gotten him approved for more help in that area. They are working very hard to get him prepared for kindergarten next year. It's not clear yet if he will be ready enough for mainstream kindergarten or if he will need a special needs kindergarten, but even if he needs a special needs kindergarten, there is a great program at the school he is at currently. That makes me feel very good. I want him to go mainstream someday, but not before he is really ready, and if he can stay in the system he already knows and is comfortable with, that works for me too. The only difference is that the special needs kindergarten is full day rather than the half day they do in the mainstream classes. I think this would be very good for Brian. The next few months will tell us better where he will end up.
Our Thanksgiving was very special this year as we had my parents here for a sort of surprise visit. My mom came to Omaha for a medical second opinion, so they tied it into a visit with us. It was so good to see them both. It has been a year since we saw them last, and it was really good for the boys to see them as well. I just wish they lived closer so that we could all get together more often.
The weather this year has been much better than what we experienced last year at this time. It looks like we may be getting our first snow tomorrow maybe? If the weatherman really knows what to expect, it will be pretty cold here over Christmas too. That's ok though, because we have had some unseasonably nice weather the past few months. We'll take it while we can. We are expecting a nice, quiet holiday here with just the four of us with no plans for travel, so if it does get cold, we will just hang out here and stay warm by the fire.
Not much more to report I don't think. I have added some new photos to the website, so check those out. Brians photo and story will be added to the National Childhood Cancer Awareness Holiday Tree website very soon, so check that out too if you'd like at :
http://www.goldribbons.com/main.html
I just checked it out and he is not there yet, but should be there very soon. Save the address and go back and check it later to see if he is there yet.
Our email address will probably be changing within the next few months as our current address is with the @home network that was part of Excite. Since Excite has gone bankrupt, there are changes being made. Our connection is through cable and the cable company we have has worked out a deal to take over the service themselves. As they get things finalized our address will finally change. When it does, I will let you all know. Until then, you can continue to find us at the @home address.
One last story to leave you with. On Brians last update I told you about Eric playing pee wee flag football and his team was getting ready to play in the championship game. They were the second placed team and playing the only team that had beaten them the whole season. The coach for Erics team always had the kids playing different positions to give them all a chance to play and make it fair. However, the morning of the championship game, Eric was goofing around at home and poked himself in the eye. He hurt it pretty bad and couldn't keep it open without experiencing a lot of pain. Jeff got some special eye drops/ointment and patched Erics eye to allow it to rest and heal (he probably had a corneal abrasion), but they didn't know what to do about Erics game that afternoon. Since Jeff was the assistant to the coach, they figured they'd better at least go to the game and help out and support their fellow team mates, but when they got there, the coach asked Eric if he could see well enough with the patch to quarterback. He couldn't see well enough to catch the ball, but he could see well enough with the one eye to throw or hand it off, so, he played the entire game as the q-back. Now, not only did he play the whole game with the patch over his eye, but he even made one of the touchdowns himself, AND, his team upset the number one seed to win!!! I couldn't believe it!! Jeff and I got to thinking how cute would it be if one day Eric grew up to be a quarterback and recall his very first experience at quarterback, winning the game with a patch over his eye!! Wouldn't that be a cool story?? Well, it's fun to think about. We don't really care what he does in his future as long as he is happy with what he does, but if he did end up in sports somehow, it would be a cute story about his beginnings. If he ends up doing anything, it will probably be baseball, but who knows. It doesn't really matter, we just thought what happened was kinda fun.
Well, guess that'll do it for this year. I hope your holidays are the best ever, and I'll check in with you all next year. Write when you can and let me know how you all are too. Take care.
All the best,
Niki
Tuesday, October 23, 2001 at 12:06 PM (CDT)
Happy Fall to everyone!
I wish I could say that and know that everyone I write to was truly happy......but some horrible things have happened in our country, and in the world since Brians last update, and it makes it hard to feel the same way we all once did. For any of you directly related to this tragedy, my heart goes out to you and your families. For the rest of you who are just simply affected by the sheer magnitude of it all in general, I understand as well, and hope that time will help. It certainly has brought most of us to have a better understanding and appreciation of our fellow human beings and for life itself. Our country seems to be pulling together more than ever before, which in itself is not a bad thing. It's just unfortunate that it takes something so horribly tragic to bring us together. I know that for me, it was just one more thing to make me look around and appreciate all that is important to me; my family, friends my life and FREEDOM!
So, onto things more "routine" and "normal"....Brian is doing very well. His big news is that he is POTTY TRAINED!!! I can't believe it! It hit me for good when I was folding laundry and sorting out the boys underwear.....and I thought, "Oh my gosh, I'm folding 'big boy underwear' for my BABY!! He doesn't wear diapers anymore!!" (except overnight) So, check off one more thing from the list of "hurdles to jump" on the road to full recovery from all he has gone through. The list gets smaller and smaller and I am so grateful. He is also eating more baby food. We have started feeding him at breakfast and lunch now , and his preschool gives him some during their snack time too. If we could figure out how to either make his food higher in calorie, or get more volume down, we could maybe discontinue one more formula feed. I'd like to see him drink more water too......these are just some things we are working on.
As far as doctor visits, they are not as often. He sees the pediatrician every month or 6 wks and has been getting caught up on vaccinations. He got a flu shot today in fact. The labs that we were supposed to be repeating last month because his hemaglobin was high, were repeated, but ended up clotting somehow, and we didn't get accurate results. However, since Brians oxygen levels were ok, and he has had no problems, we decided to wait til his next oncology checkup to repeat them then. That will be at the end of November. Hopefully all will be fine til then and his labs will be ok when he does get them.
So, basically everything has been fine with him and there hasn't been a great need to report anything before now. He still cracks us up everyday. His speech and language continue to progress all the time.......the things he comes up with are incredible......there are a few words he has trouble with......I mean, he says them, but they sound like things he shouldn't be saying, so we are working on those! (like "sit up" sometimes sounds like shut up, and "frog" sounds like......well..... let's just say it's not a nice word!! and when he says "I'm stuck" it sounds like "I'm Chuck" or "I'm silly" it sounds like "I'm sissy") There are some funny things he says, that he picked up from some of his favorite shows on TV......when something doesn't go the way it was supposed to he says, "Ohhhhh mannnnn!" like Swiper the fox says on Dora the Explorer, or when he is surprised by something he says, "Oh my gosh!" (but it comes out like "oh my gots!") like Oswald the octopus, and when he is feeling silly, he says," Great googely-moogely!" from Maggie and the ferocious beast........but the best thing he says now, totally on his own is "I wuv you mama" (or dada) and "biiiig hug". He is so sweet and polite sometimes.......he apologizes all on his own when he hurts someone (like this wkd when he was sitting in front of eric on the floor, threw his head back toward eric, and knocked erics other front tooth out.... YIKES! .....a little before it was ready to come out!......eric was bleeding and crying and brian told him "sorry, sorry, my fault, my fault.....sorry eric"). What a sweet little goof!
Eric is doing well. He was the student of the month for September in his class, and has had a letter sent home from the principal praising his work, attitude and good job overall. His first quarter marks were great and his teacher says she wishes she had a class full of "erics"! It makes us so proud, and we hope that he always loves school and does well as he gets older too. His pee wee flag football team did well this year, and they are in the championship game next Sunday against the only team they lost to. It's been fun for him to play and fun for us to watch, but it looks like baseball is the sport that is his favorite and the one that he excels in best. We'll see how he does next year when he plays real little league. They are a little more serious than the YMCA program was.
Jeff and I are doing ok. We are getting out when we can and trying to recover from the last 4-5 yrs when our lives were not really our own. We are doing more things together as a family too, and that means a lot to us after all the time that Brian was sick and unable to go to the places we can go to now. It's nice to think about and plan trips now for next year as a family, and to have taken one this summer to Seattle. Although there are still a few hurdles we have to clear in Brians recovery, it feels good to be this close to a "normal" family as we've ever been. Our definition of "normal" will never be the same one that's in the dictionary or the same one we had before Brian was born, but, we know it could certainly be worse, and will take this "new normal" over where we've been. We just try to keep things in perspective and try to appreciate what we have. Something I found recently sort of sums it up for me:
"Being happy doesn't mean everything is perfect.
It means you've decided to see beyond the imperfections."
I think I'll close with that thought. I hope you all are doing well. I have included Brians new preschool picture on his website, and am expecting Erics to come back soon, so I will add it to the website as soon as it does. If I don't write before Thanksgiving, I wish you all the best for a wonderful holiday filled with love and good health and most of all, peace.
All the best,
Niki
Thursday, August 30, 2001 at 09:28 AM (CDT)
Well, hello again everyone. Hope you all are well.
We've recently passed another milestone.
Friday, August 24th, Brian turned 5 yrs old! WOW! I have to say, there was a time we didn't think he would make it to 3 yrs old, let alone 5 yrs old, so this is really a nice surprise. It's also been almost a year since we moved away from Colorado to make a better life for Brians lungs and development. As much as we aren't crazy about living here, we know it was the right thing to do for him when we look at how much progress he has made in that 11 mos. A year and a half ago, he didn't walk.................now he can't stop walking or sit still! He went almost 4 yrs without really talking (there was jibberish, and then he learned sign language)..................and now he won't be quiet! He stumbled and tripped over oxygen tubing and was so limited in the kinds of activities he could do............now he's riding a trike, climbing a ladder to go down a slide (by himself) and playing baseball (with adult help) with his brother. He's been in diapers for almost 5 yrs.............now he's potty training and trying to go by himself (not quite there, but doing much better). He's singing songs, spelling words, playing games and computer CDs.................it's amazing how much he can do now that he couldn't do before. Best of all, he is beginning to eat! (more on this later) So, 5yrs may not sound like a lot, but for Brian, and for us, it's a very big milestone.
School started back up for the boys............last week for Eric and this week for Brian. Today they had to leave school early because of the heat index.........some schools in the district are still without air conditioning, so when it gets too hot, they let them ALL out. Erics in 1st grade this year and goes all day, and Brian is in preschool again in the afternoons, in hopes that one more year will prepare him for kindergarten next year. There are still some skills (like writing, using scissors, sitting still and listening and social skills/behavior) that he needs more work on to be ready. In some ways, he is more like a 3 yr old. He is such a joker, and a clown. We are sure we will be getting calls from the school about him interrupting the class with all his antics. He's really pretty funny, so it's hard not to laugh, but we don't want to encourage him too much or he will think it's ok to do all the time! He makes up his own knock-knock jokes, changes the words to things that he thinks are funny (like when we tell him he is a silly goose, he says, no, he's a silly duck!), he likes to play copy cat with Eric repeating everything Eric says (which drives Eric crazy!!)............he's just a goofball! Anyway, we hope that this school year will bring even more improvement in Brians learning and development. Eric finished tennis and baseball this summer and now is starting pee wee flag football. They had their first practice on Sunday, and after learning skills, they played a mini scrimmage among themselves. When Eric played offense, they handed the ball off to him and he ran for a touchdown!! (it was the only score any of them got) He was so cool and non-chalant about it too.............some of his teammates would have been jumping up and down or spiking the ball, but he just ran in and then casually jogged back to the group (all the while I was screaming on the sidelines, "YES! Way to go Eric, good job, nice run, TOUCHDOWN!!" lol---I'm a proud mom, what can I say?!) He loves sports so much........we used to set the TV channel at night for a childrens show for him to watch in the morning if he got up before us........now, we set it for ESPN so he can catch up on all the latest sports scores!! (then when I come down in the morning, he rattles them all off to me!---good thing I like sports too, I guess!)
We've made some more changes in Brians diet recently. First, we started a supplement that we heard about. It is supposed to help with speech delays, and give more focus to kids who seem to have a little extra energy. Basically, it is fish oil, and comes in many different forms.........it is an essential fatty acid (EFA). There are two kinds of EFAs.....Omega 6s and Omega 3s. The general population gets PLENTY of Omega 6 EFAs (the kind of fats that cause problems) and not enough of the Omega 3 EFAs ("brain food"). Kids like Brian, who don't eat at all, definitely don't get enough of these, so we wondered if we supplemented them, maybe it would make a difference. We started about 6-7 wks ago and the changes are incredible. We read that you can REALLY tell the difference most when you take them off the supplement, because you will watch all the past delays and problems come back. I am still learning a lot about all of this, so I apologize if I am explaining something inaccurately. Once he is eating a normal diet, and can get at least one serving a week of a fatty type fish (salmon, tuna), he wouldn't need the supplement anymore. The supplements are meant for people who either can't get enough Omega 3 EFAs in their diet or just don't like fatty fish enough to get it. We found a product called Coromega, that comes in a small packet and is flavored like a dreamsicle (we tried it! it's pretty good!). There is only about 2 tsp worth in the packet, and we just squirt it out onto a spoon and he eats it. And HE LIKES IT!! The thing is, this sort of spurred an interest in "eating" other things.......so we got the baby food out again and started trying different ones out on him. At first, he made funny faces and we went very slowly with him trying to get his "virgin" taste buds used to the different tastes........but each night his reactions were more and more positive, and he would take more and more bites. He got used to the routine and expected this every night at dinner time, so we kept it up. Then, we talked with the GI team about making a big move to make him feel more "hunger"........when you get fed every three hours six times a day, you always feel full and have no hunger or desire to want to eat or drink. They decided it was ok and we cut out three of his five feeds. This would cut his calories by 20%, but to avoid him getting dehydrated, we would replace two of those feeds with water. I was a little worried about what might happen, but after 1 1/2 days, all on his own, he said to me, "I'm hungry mama"........I about fell on the floor........I didn't think he even knew what those words were! He said he wanted a pickle and a cracker and some water! Of course he didn't eat any of them, just licked or sucked on them, but, it was still big! Then he started taking in more and more baby food. It's still a long way off calorie-wise and volume wise, but it's such a big improvement from where we were. Today he even asked for some when he got home from school, and tonight he even asked for more than we normally give him! Like I said, it's still a long way from where we need to be, but I was thinking how nice it would be to get enough calories in him by mouth to discontinue his 9pm feed. Then we could let him sleep in a normal toddler bed instead of his crib (because we wouldn't have to worry about him getting up during the feed and accidentally disconnecting his feed or pulling his g-tube out). Of course, it would be nice to be COMPLETELY off pump feeds through his g-tube, but nothing ever progresses that fast, so it's with baby steps we continue to move forward.
Brian had his 3 month follow up labs and visit with the oncologist this week too. This was the first time he has had to have labs without a central line to draw from, so we got out the emla cream (an anesthetic type cream to numb the skin so he wouldn't feel the "stick") and headed down to the clinic. He did really well.....didn't like being held for the stick, but as soon as it was done, he was happy and asking for stickers! What a trooper!! I thought that it wouldn't be too difficult to have to do this every 3-6 mos, but it turns out that his hemaglobin was a little high (16.5) and they want to repeat it along with a venous blood gas in a month, so he'll have to get stuck again sooner than I had hoped. Hopefully it will go as well next time too. The concern, mostly, is for Brians lungs. They're wondering whether he is oxygenating enough. They checked his O2 sats in the clinic and they were 95, 96, 97, so they were fine, but want us to check them every now and then at home over the next month to make sure they are ok. It seems like he's been doing fine since we've been here, so I hope something new isn't going on with his lungs that will require oxygen again. I would hate to think that we made this move to get him off oxygen only to have something come up that puts him back on it again!! We'll see, but I hope it'll all be ok. Another possibility is that it might be a little related to him being dehydrated, but it's not as likely as being related to an oxygenation problem.
Well, we FINALLY got our basement done! YEA!! So, now we've been busy trying to get everything unpacked and put away down there as well as setting up the guest room too (that is where some of the basement stuff was being stored before). The court case is still pending against the contractor who did everyone wrong, but at least we have our project done and can live in it now. It turned out pretty good despite the trouble and expense we had to go through to get it done.
I had a very brief get away the first of August. I had an airline ticket that needed to be used up so I went back home to Colorado. I saw 4 friends in 2 1/2 days, and stayed up til 2:30 in the morning two nights in a row talking to two of them! It was way too brief a visit, but good to see at least a few friends. I was hoping for a nice break in the weather, but it turned out to be almost as hot there as it was in Omaha when I left. Oh well. Jeff took care of everything at home while I was gone, and it was a nice break from my normal daily routines/job. I'm so grateful to have his help all the time. We haven't had the opportunities recently to get out by ourselves, but we have been spending some time catching up on videos at home and some quality time talking after the kids are in bed. It helps to reconnect that way. We have about 4 new young ladies who are getting their paperwork set up with the state to become caregivers for Brian, so we will have more people to choose from when we want to get away. I hope that we can start using/training them soon. It's been good to have Whitney for the past year, but, she has a life of her own, (new job and getting married in Oct too!) so no matter how much she tries, she can't always be available whenever we need someone. Hopefully, between 5 caregivers we can find someone to help whenever we need them. Slowly, but surely, it seems we are managing to get back a glimpse of our previous lives/dreams. It hasn't been without a lot of work, and many scars. We've paid a high price to get to where we are today, but hopefully in the long run, it will have been worth it.
I'm sorry this ended up being so long......I hope that you all have enjoyed your summer and are staying happy and healthy. It's great to hear how you all are doing too, so write when you can.
I have pictures to finish off on the roll we have and then will post them to the website. There should be some good ones including Brians 5th birthday, so check the website in the next couple of weeks to see the latest.
Take care.
All the best to everyone!
Niki
Tuesday, July 17, 2001 at 08:01 AM (CDT)
Hi everyone,
I'm so sorry once again, that this is so overdue. With summer here and kids out of school, my "free time" to write is pretty much non-existant! (only 34 days left til school starts!!) Plus, I was waiting to finish off a roll of film so I could add some pictures to the website. They are of Brian at his preschool circus......he was so cute! Be sure to visit there and see our very own "dancing bear", "amazing acrobat" and "strong man"!!
Brian recently visited the pediatrician again for a general follow up and more immunizations. He has grown 1/2" and gained 4 # (ugh!! 40 lbs.....I sometimes wish he'd shoot up in length for once to catch up to the weight!). He DID get his central line out finally on June 5th. The first try in the office did not work because it was adhered down to the tissue too much and would have been too uncomfortable to take out in the office. They scheduled him for removal under anesthesia, made a small incision to cut the line away from the scar tissue, and took it out. The procedure went very quickly and he did fine. For a few days after, he kept asking if we were going to flush it along with his g-tube flushes, and I had to remind him that he didn't have it to flush anymore. I think he was just used to the routine, but doesn't miss or notice that the line is gone. So, now he is down to his last attachment......the g-tube. I can't tell you how much I wish we could be rid of that too, but it still seems to be a distant dream. He has sort of plateued with eating by mouth. He still tastes a lot of things, and wants to have a plate of things with the rest of us, but does nothing more than "taste"......which is better than nothing, but I wish we could get over that "hump" and have him start biting and chewing and swallowing those tastes, you know? He decided that he wanted milk to drink one day (like his brother) so we gave him a little bit.....but we noticed that after he had it, he always had horribly loose stools or blow outs, so we figured that the suspicion that he had a milk protein intolerance was true, and we switched to soy milk. He likes it and has no reaction to it like the milk. I am happy that we have more forward progress than backward, but it gets a bit frustrating sometimes with the slow pace of that progress.
Brian went to summer school too, and did well. He had a little school bus come to the house and pick him up and the school van brought him home. He looked so cute getting on that bus! School was three weeks, but he missed one week when we went on our vacation (more later on that). After we got back we went ahead with our plan to start potty training him. Oh boy, what a job THAT is! He is about 80-90% successful with the potty part of it, but has a little more trouble with the bowel part......he has gone twice though with that, and we have made such a big deal about it and gave him some special new books, so he keeps talking about " go pee-pee, get a sticker, go poop, get a book"!! I just think it's a little harder for him on the bowel movements cuz they aren't normal like most kids, but we're going to keep at it. My short term goal is to have him trained by the time school starts on Aug 20th, but my long term goal is to have him trained by the time he starts kindergarten next year.
We took our first official family vacation at the end of June to Seattle. The kids did well on both flights to and from and we all had a nice time. The weather was nice and cool (what a switch from the hot and humid midwest!). We stayed with my brother and his family and had a good time catching up. It was fun to see the "cousins" (my niece Erika, who is almost 13, was great with the boys) meeting and getting to know each other and making memories. I know they will certainly not forget Brian too soon!! He is such a clown, and joker......he's into making up his own knock knock jokes.........and I think Eric impressed everyone with his smarts and athletic ability. I hope we can keep them seeing each other more often so they don't forget. I was hoping that Erika could come out for a visit still this summer, but don't know if that will work out. I'm glad that we at least got some quality one-on-one time together while we were there. She has grown into a very bright and beautiful young lady.
We went to the zoo in Seattle, and the aquarium. Jeff and Paul and Eric went to a Mariners game at their new field (they won too) and it was "youth day", so all the kids got to go down onto the field with parents and tour the field. On their way by the bullpen they got to high five one of the pitchers. They gave out hats to the kids too (it says Edgar on it--for Edgar Martinez). My brother also got Eric an autograph from Jay Buhner, so we put that away for safe keeping.
Jeff and I also celebrated our 16th wedding anniversary while we were in Seattle, and got out briefly for dinner while my brother watched the boys.
Eric had a special visit when we got home from Seattle from one of his best friends back home in Colorado. John and his mom came to visit for a couple of days, and it was good to see the two of them having a good time......it had been 9 mos since they had seen each other, and they picked up where they left off like there had been no time at all. I hope we can keep them in contact over the years to keep their friendship alive over the miles.
I think the last of my update is on our basement project. It is almost done, YEA!! The carpet was installed yesterday and looks great, and the basement looks like it's all done, but there are a few things to do yet. Our guy had to go out of town for 10 days, and will be back to finish things tomorrow, so hopefully by the end of the week it will officially be done. As far as the "bad guy" goes, Jeff went to court at the end of June to the preliminary hearing on holding the contractor over for criminal fraud charges. The judge ruled that there was enough to hold him over for trial. We don't know what will happen now, if he will plead guilty or go to trial, but it would be nice if all of this forces him to pay restitution to all parties involved.........thing is, we recently found out that he has started all this over again.....finding new jobs using a new last name, and has now also not paid the subcontractors again......I just don't get what he is doing and where the money is going. Time will tell what will happen with all this, but I am relieved that we are at least getting the job done by someone else, even if it is at the extra expense to us.
Well, let's see. I think that is about it. Jeff got a new very short summer haircut like Erics (actually shaved!! and much shorter than Erics!) but he likes it and it's certainly easy to take care of....no need for a comb anymore!! I'm finally getting used to it now..........Eric has been playing t-ball and tennis and doing very well in both. He has a summer day camp with the Y coming up next week where he will be reunited with some of his school friends too. I am taking a short trip to Colorado next month and will see a couple of friends. Wish I could make it longer to see more than that, but it's all I have time for on this trip.
Well, I guess that is it. I hope that your lives, your summer are all good and happy. I send out special thoughts and prayers to two families I know.....one in Evergreen who just delivered their set of triplets at 25 wks a week ago, who are currently hanging in there and fighting for their lives one day at a time. Also to my other friends in Utah whose daughter is fighting for her life with an unknown disease that seems to be turning into lymphoma?? We're not sure what this is, but it is serious and I hope the treatment will bring her a cure.
My best to you all,
Always,
Niki
Saturday, May 26, 2001 at 10:53 PM (CDT)
Hi all,
Just a quick update with some exciting news and new photos, so be sure to check Brians website for those.
We went in for Brians visit to the oncologist on Tuesday this week. All went well, his counts were fine, and it has been decided that Brian can have his central line taken out..............YIPPPPPPEEEEE!! Sometimes this is called a "port" so, now we can say he is going to be DE-PORTED next Wednesday, the 31st! Can you believe it? He will be seeing the oncologist every three months now, and there is really no need for it anymore, so, it's going to be GONE!! In three months though, he will have to have labs drawn the old fashioned painful way, but hopefully, it won't be too bad for him, and it will get to a point where he may be able to go 6 mos or longer without labs, so, no point holding onto the line for that. It's an infection risk, and gets in the way sometimes with risk of it getting pulled out, and needs flushing and dressing changes every day and every five days, so, ONE LESS THING TO TAKE CARE OF! (Of course, it figures though, that we just stocked up on syringes, dressing change kits, saline and heparin!! Anyone need any of that stuff??)
The other news is that last week, Brians preschool class put on a circus for the rest of the school and the parents/families. All the kids played different acts, and it was the cutest thing ever!! Brian was the dancing bear, one of the acrobats and the strongman!! The strongman act was the cutest!! We got it on video, and got some photos (although, not developed yet), so as soon as I get them back, I'll add them to the website. All but two of the kids in the preschool class are special needs kids, so to see all these kids doing this circus, and doing it SO WELL, was really emotional............all the while I was watching Brian, I was thinking, "if only the PICU staff and oncologist and nurses, therapists, friends, etc. back home, who saw him when he was near death could see him now, they would NEVER believe their eyes!!"...........I was so choked up. It's truly amazing how far he has come. I wish I could show you the video on here........
Erics last day of school is next Thursday, and they are going to the zoo on Tuesday for a field trip. He starts t-ball the beginning of June. Later in June he will begin tennis lessons, and in July, he is going to a week of day camp at the Y.......it also looks like his friend from back home might make a visit out here too. He is really excited about that! Brians last day of school was yesterday, but he starts summer school on the 11th of June for three weeks. We go on our first real family vacation to Seattle the end of June. Anyway, that's it for now. Just wanted to send this out now while I had a minute so that I don't get too far behind. Hope you all have a nice holiday weekend.
GO AVALANCHE GO !! (one game down, three more to go!!)
Take care.
Niki
Monday, May 14, 2001 at 10:13 AM (CDT)
Hi everyone! The day is almost over, but Happy Mothers day to those of you who are mothers. I hope you had a wonderful, day filled with lots of much deserved TLC! Mine certainly was!!
Onto the business of Brian...........he is still doing great! He has recently had two more immunizations without trouble, so we will continue on with the rest til he is caught up again. There are still two that he won't get though, and I don't know how long it will be til he can have those (MMR and small pox).
Since we increased Brians feeds a month ago, he has gained 3-4 pounds and his height has increased a little bit too. He still has about 10 inches to catch up on to be where he should be, but maybe in time that will come too. We've made some more changes in his feeds too. He still gets 5 feeds a day but we cut out the 3pm feed and added it onto the 9pm feed at night when he is sleeping anyway. We just run the two feeds over 2 hours. Since we have done this, he shows A LOT more interest in tasting and drinking at 6pm when we sit down to eat. The window of 5 hrs between his noon feed and the 6pm feed seems to be making him feel a little hunger and thirst........certainly our goal, and it is working. We also started giving him some baby cereal (either rice or oatmeal) at dinner time too, and he eats it, so we are progressing forward, even if they are baby steps. I've been able to make the cereal a little thicker too and he still swallows it without much trouble. The other night he grabbed a corn cob and started sucking the butter off it! I got a picture of him, and will put it on the website when the roll comes back. One night, he grabbed a spicy hot wing and sucked on that for awhile too...!! I couldn't believe it! He kept asking for more! I thought for sure he would think it was too hot, but he kept licking it!! Go figure, huh?
He is really talking alot more every day too. So many more words are becoming more and more clear, and he is such a clown most of the time.........we are convinced that when he enters into regular school someday, he will probably be the kid who is cutting up in class or disrupting the rest of the kids!! The class clown, for sure!
Eric and I were supposed to head to Colorado for a quick trip over spring break, and we did get started, however Eric got sick on the way and was throwing up in the car along the way. He said he wanted to try to keep going, so we did, but after getting three hours outside of Omaha, I decided it was time to head back.......he was disappointed, but I just couldn't be sure how sick he was and didn't want to be stuck somewhere far from home if he got really bad. Poor kid, had to endure most of this sickness in the car.........after about 24hrs he was better, however, 24hrs later, I was throwing up and miserable too!! it was horrible, but at least I was in the comfort of my own home, and not traveling in a car! So, we're sorry to those of you we promised to come and see, but we'll have to try it again some other time. Jeff and Eric took a road trip a week later though down to Dallas to see family there. Jeff had a medical conference there, and made a mini vacation out of it for him and Eric. The weather was great for them and they had a great time visiting family (just didn't like the 12 hr drive too much!).
The kids get out of school the 31st of May.........I can't believe how fast the school year went by!! They have both done very well and really like school. Eric will move onto 1st grade next year, but Brian is going to repeat preschool one more year instead of heading to kindergarten. We all feel he needs a little bit more catching up to do before he is ready for kindergarten. Since his birthday is in late August, I think it would be better for him anyway regardless of all he's been through.........I'd rather he was a little bit ahead when he goes than behind and always trying to catch up. He is going to three weeks of summer school too, so all of this should help him get caught up to where he should be.
We still are struggling with our basement project...........right now we are trying to find a new contractor to finish up the last of the work, and we will be hiring our own electrician and plumber and painter/stainer to finish up those areas as well. The contractor we originally hired has filed bankruptcy, and has been arrested once for bad check charges...........the DA's office is investigating to see if they have enough evidence on him to try to prove criminal fraud...........we are sure we won't ever see our money back from him, but at least it would keep him from doing this to anyone else........there are 4 other families from our neighborhood in the same boat with us who have turned information into the police dept. Who knows how all that will turn out, but in the meantime, we would just like to find someone to finish this job so we can move on with our lives. It's been a real pain the neck! We also had to put off buying the new minivan we ordered since we are having to use that money for the work that still needs to be done........I was disappointed but, we will just try again when this whole mess is finished.
Jeff and I are continuing to find more time to get out and do things together and really enjoying it. We've had some great weather here lately and have been doing a lot of work in the yard, planting flowers, etc. I even learned how to mow the lawn for the first time ever, and actually enjoy it (for now anyway.........come August, I probably won't be liking it as much!!). It gives me a chance to get some sun, exercise and freedom from the bickering, sibling rivalry that sometimes fills my life now!! I put on the headphones and start walking!!
So, that probably catches us up for now. Brian goes in to see the oncologist in about two weeks, and I'm sure we will talk then about whether it's time to get "de-ported" (have his central line removed). It's looking more and more like we just don't need the line anymore, and we are probably going to be going even longer without needing labs, so it may be time. That will be nice, if we can do that...........and then maybe we can introduce Brian to a swimming pool for the first time ever! Since he is finally enjoying bathtime so much more, I bet he will like the pool too. I'll let you all know after our next visit.
Oh! and check out the website as I put Brians school picture on it.......it's so cute, we can't believe they got him to pose so perfectly!
I hope all is going well for you all, and that your spring/summer is beautiful. Take care and keep in touch. We love to hear from you too!!
Best always,
Niki
Monday, April 09, 2001 at 07:53 PM (CDT)
Hello everyone, it's finally spring here!!!!!
Finally, the weather has changed and I am so happy to see it!! We've actually had some 70's here and it has been so nice. We went to the zoo yesterday, and let me tell you, we weren't the only ones with that idea, but it was still fun and good to get out.
Brian continues to do well. His last oncology visit was two weeks ago, and his counts remain good. His tetnus titer looked good too, so we will start slowly adding some new immunizations to get him back on track. With the good weather, Brian seems to be showing signs of allergies, and we had that checked out and everything is consistant with that, so we have started him on some Zyrtec to hopefully relieve some symptoms and make his life easier. It has already made a difference after only a few days.
We have made a change in Brians feedings. The GI doc decided it was time to get more aggressive with them, and wants to see him start gaining weight and height, so we increased his formula by 15%. He is tolerating it pretty good.....some occasional gagging, and sometimes his tube leaks a lot at the button site, but otherwise he's ok. We also are down to 5 feeds a day now instead of six, so it gives him a small window where he might actually be allowed to get hungry. We discontinued the 6am feed, (I don't mind missing that one myself!!) so he goes without anything to eat from 10pm at night til 9am the next day. After receiving an update from my cousin about her 4 mos old baby about a month ago, it occured to me that Brian never got to eat rice cereal like her baby was and that maybe we were going about all this teaching him to eat stuff the wrong way. So, I decided to see if I could try rice cereal with him. I knew that it would have to be very watered down because it's the only thing he is comfortable swallowing, and it actually worked. I started out small, and we do it every day sometime between 8-9am when he might actually feel hunger......I have been slowly increasing the amount as he tolerates it, and he actually likes it. He likes the whole routine and looks forward to and expects it now. The idea is that as he gets used to it more and more, I can slowly increase the thickness of the cereal so that he can then slowly learn how to process different textures and swallow those too. It's just like new babies do every day, but for Brian, it comes much later in life. But how can we expect him to understand how to bite, chew and swallow solids when he's never learned how to manage the small stuff?? So, for now, it's working, and although I am impatient to get to the end result, I am happy that we are moving in the right direction. He has gotten over so many hurdles in his life, and has progressed through so many setbacks and delays........we are so hopeful that he can get through these last two hurdles--speech and feeding problems--and finally move on to a truly "normal" life......we know it's not impossible, but it has become such a long chronic phase in his and our lives, that it sometimes feels like it will never happen. After almost 5 years now, I think we are really having a hard time holding onto patience with this, and the closer we get to it, the farther away it sometimes seems. But, we will not give up. What choice do we have? It is not an option, but it just makes life more difficult and complicated sometimes.
Now, as if we didn't have enough stress in our lives, we are now faced with a new one.......our basement remodel. We are about 90% done, and have paid for 97% of it........it is probably 1 week to 10 days from being done if someone would just come out and do their job.......but, we have found that the contractor we hired (and thought we checked out pretty good!) is into a lot of trouble!! He has numerous jobs (prior to ours) that are finished (the actual work is exceptional) but whose subcontractors have not been paid......meaning, we and they have paid the contractor........the subcontractors have done their work (electrical, plumbing, etc), but the contractor has not taken the money we gave him and paid them for their work........so many homeowners in our subdivision who have also used him, along with ourselves, now have liens placed on our property by the subcontractors because they want their money.........too bad that we have already paid for it, but they want their money, and are probably not going to get it from the contractor.......we have had to involve an attorney, so that means more expenses on top of what we have already put out to complete this job, and we are now going to have to pay someone ELSE to finish the job (that we've already paid once for!). So, this is really a major headache right now!! Certainly not what we need at all (nor does anyone really). We are hoping to have this nightmare taken care of soon, so we can move on with our lives and finish "moving into" our house......since many of our things are still in storage waiting for this job to be done.....we can't even have guests yet, cuz our guest room also is holding a lot of what belongs in the basement!
Anyway, that about brings you all up to speed on where we are. Spring break is next week for the kids, and Eric and I are going to make a whirlwind trip back to Colorado for four days (two of them driving!!). He wants to see his old best friends and reconnect with them, and I want to try to see some of mine as well......it's too short to see everyone, but I am looking forward to at least getting to breath some good mountain (dry) air and enjoy the natural beauty that I will always call "home".......Jeff is off work next week and will stay with Brian (since he can't handle the altitude yet), and then spend some time with Eric as well when we get back. I hope we will be able to find some time for us as well while he is without the usual responsibility of going to work..........(Whitney??? are you available to babysit???? hee hee) We have actually had a couple of days out in the past month......one for my birthday and another this past Sat to go to a surprise party for Jeffs boss (one of Brians transplant nurses and his wife came to our rescue this time!!--thanks guys!), so we ARE getting out, but, just not as much as we once had before our lives changed so dramatically with Brian. It's hard not to miss that old life, but, we certainly appreciate the little time we DO have now because of what we've been through. You just never know what life will give you, but you have to make the best of what you've got.
I hope this finds you all doing well, enjoying the warmer weather wherever you are, and that you will have time to write back and let us know what's going on in your lives. I appreciate the support that you all bring to me/us.
Take care,
Niki
Tuesday, March 13, 2001 at 09:44 PM (CST)
Happy March, Happy St. Patricks Day, Happy (hopefully SOON) Spring!!!
Once again I find myself so behind on sending out the latest news from our "camp", and I apologize. A lot has been going on keeping me busy and unavailable to sit and write, but I'll do the best I can to catch you up.
On Feb 20th, Brian went in for some minor procedures under anesthesia and all went well. He had his ears drained of impacted wax, and had his hearing tested. Both ears and hearing are fine. This now allows any of his docs to actually SEE his ear drums now if they are ever looking for infections. He also had dental xrays and had his teeth cleaned. The xrays show that Brian has no root system under his baby teeth........basically, nothing really holding them in!! and many are loose. He could end up losing some of his teeth before he normally would, and before his big brother!! Eric FINALLY has some loose teeth, but is really worried about Brian losing a tooth BEFORE him (ha ha ha ha, what a goof!)! Anyway, Brians root system is most likely missing due to the fact that at the time when the roots would have been growing and developing, he had all that major high dose chemotherapy.........ZAP!! POOF!! GONE!! The pediatric dentists also told us that not only were the roots of the baby teeth affected, but most likely the crown portion of the permanent teeth will be affected somehow too........not sure how at this point.........if they will be missing or just discolored or what......only time will tell. Not too concerned about these things now, but we hope we have some control over what happens when his teeth become loose enough to fall out, since he does not eat or chew or swallow solids.........he still freaks out if a soggy piece of cracker breaks off in his mouth because he doesn't know it's ok to swallow it........so what's he going to do with a TOOTH?? (hopefully not choke!!) This whole "loose teeth" thing makes me somewhat grateful now though that he DOESN'T bite and chew, because that could make the teeth come out sooner if they are that weak or loose. One more thing that proves to me that things happen when they are supposed to! Anyway, the dentist did say also that Brians gums were terribly red and inflammed, and needed more consistant brushing. So we have taken up a better brushing program for him. He doesn't like it, but we have made a chart for him where he can get Blues Clues stickers to put on it every day he brushes. At the end of two weeks of brushing, he gets a "reward"........he is doing better than he was, and although still doesn't like it much, he really wants to get that sticker and put it on the chart!! His gums look much better already after only a couple of weeks. Unless he has any trouble, we don't need to follow up with the dental clinic for 6 mos.
The GI doc decided it was not necessary to do a scope at this time, so we are just following up with the feeding clinic once a week. Brian goes in for an hour with other kids who all have different eating disorders. The idea is that they all watch, and mock each other and learn how to do whatever it is they need. Brian seems to be the most comfortable one there and is very chatty and cooperative and happy. I think the other kids are getting more from him than he is from them, but that's ok too. We've done this for about 4 wks now, and I'm getting a little impatient, but will hang in there. I'm thinking it's time to mess with his feeding schedule and volume, like maybe either increasing the volume he gets now so he can start growing more (instead of just maintaining where he is) or change the feeds from 6 feeds a day down to eventually 3 feeds a day (brkfst, lunch, dinner) so that he has a larger "window" of feeling "empty", and might actually GET hungry, and maybe WANT to eat...........I've gone this long though, so a few more weeks of what they are doing in the clinic won't hurt me. After that, I might have to get a little more aggressive with making some kind of change.
Brian did go for his regular pediatrician visit a couple of weeks ago (since we are now alternating with the oncologist visits). It was a week after having his ears drained, so it was the first time the pediatrician was ABLE to see in his ears.......and WOW! wouldn't you know it?? Brian had a little bit of fluid backing up behind his ear drum! He had had a little bit of a runny nose, but wasn't really sickly, but had enough fluid drainage that it started to back up into his ears. So, the pedi put him on some antibiotics to keep him from getting worse. We would have never seen that before the draining was done, and he might have gotten really sick before we knew. (and even then it would have been a guess, since you couldn't see in his ears before) He's been fine, and sees the pedi again tomorrow for a recheck since finishing the meds. Brian also had his tetnus shot a few wks ago (the first of his immunizations again), and the oncologist will check a tetnus titer in two weeks when we go in for labwork and oncology work up. If Brian shows the antibodies for tetnus then we know his immune system is ready to move on to the rest of his immuniazations and get him caught up with where he should be.
Brian has been progressing by leaps and bounds in preschool!! He has known things like letters and numbers for awhile, but only to the point of pointing them out when you asked him to. Now, he can actually SAY them and can COUNT (to 20). Everywhere we go, and everything he sees, he spells out now. He sat at the dinner table one night doodling with his magna doodle and we suddenly thought he sounded like he was spelling something.......it sounded like his name. We asked him if he was spelling his name and he said yes. So we asked him to do it again, and he proceeded to (pretend) to write as he said, "b........r........i.........a.........n! briba!" (brian)........only as he was scribbling, he actually wrote out the i and the a!! We were amazed!!! We thought, "where the heck have WE been??? when did he learn THIS??".......apparently, they sign in every day at school, so he's been doing it for awhile. He's really talking ALOT more now and it's great (although, sometimes it's VERY TIRING!!!!). He is walking up and down stairs now without assistance (although, I still get very nervous that he will turn around or not pay attn to what he's doing sometime and just GOOOOOOO tumbling down.........eeek!) He's learning to kick and has his own version of running (very fast walk). They are working with him to learn peddling so he will be able to ride his trike by himself. He LOVES going outdoors and doesn't seem to mind the cold. He is so disappointed the times when Dad and Eric go out in the cold when we won't let him (he WON'T wear mittens or gloves) go too........so, I am looking forward to the nicer weather when he can go out with less worry of getting so cold!
As for the rest of us, Eric continues to amaze us with his smarts in school.......he was chosen as student of the month in December, and seems bored with the reading they send home with him.........."this is so easy mom!"........he is in a mentoring program with a few other students where a college student comes in once a week and works and reads with them at their level so they can continue learning without getting bored with the level that MOST kindergartners are at; we have told him that this does not mean the rest of the kids in his class are not smart.........they are EXACTLY where they are supposed to be in kindergarten and learning what they are supposed to learn, but that a few kids just happen to be past that.........we don't want him going around thinking he is "better" than anyone else, but just advanced in some areas......and there may be a time that HE is the one who needs a little extra help or is "average" in something and that that is OK.
I have been going in every Wednesday to his class and help his teacher out with the kids who are farther along in their reading skills. I have them read their assigned books to me, read their homework to me and then assign them a new book/work for the next week. It has been fun, and is a nice way to get to know the kids in his class that he talks about.
I am also watching a neighbor boy on Tues mornings so his mom can work extra (she is an accountant who works only during tax season). They have helped us out so much with Eric already because of Brian, I thought it was the LEAST I could do in return.
I also got away last weekend by myself for a 4 day visit to Canada to see one of my fellow online cancer moms. It was a great getaway and nice break from my usual daily responsibilities. Jeff took off work so I could do this, and it was MUCH APPRECIATED!!!! Although, I don't think any of them really missed me very much!! Supposedly Brian said "mama" the whole time I was gone, but when I walked in the door and came to see him, he kept saying, "nooooo, mama, nooooo"........shaking his head if I got too close!!! Think he was a little mad at me??? I just left him alone then and after about an hour he was ok with me. If I ever go away again, guess it'd better not be for more than 4-5 days, huh?? So much for 10-12 days in Greece with my mom........... :(
Jeff is busy with work and getting taxes ready and helping me out all the time. We have our first ever REAL family vacation (not one where we are going somewhere to decide whether we need to move or not!!) planned for June to see my brother and his family in Seattle. My neice and SIL have never even met Brian. We're hoping that the trip goes well (and that there are no more EARTHQUAKES up there!!!)
I guess that's about it........long, I know. Guess I get a little too wordy sometimes, eh? (picked that phrase up in Canada!) I would like to mention (to those of you on my update list who are not on the PED-ONC [pediatric oncology] online support group) that part of the reason I have not been up to writing an update for awhile is because I have been closely following the updates of a young boy going through his second transplant. He was 12 y.o. and was quite a fighter, and much of the past few weeks have had him struggling through the exact same complications that Brian had during his first transplant. It was hard to follow without it feeling so personal. It was hard not to have all those distant memories and nightmares come back like they were yesterday. It made me look at EVERY DAY with Brian here as a miracle. A gift. Somehow he was spared. I don't know why some are spared and some are not. I will never know how long Brian will be here, but I must remember to take advantage of every day I have with him, and Eric and Jeff and my family and friends. On March 10th, after just over 3 yrs of struggling with the beast known as "cancer", this young man lost his life. He had highs and lows throughout the past 3 yrs, but never lost his fighting spirit. He touched the lives and hearts and souls of so many people around the world. I have been told by many people that Brian does the same thing , and I have to believe that this is a good thing. So, even with loss of life, we all leave our mark on the world and on the people in our lives. What is important is the kind of mark we leave behind. I am sharing this with you all today just as a reminder to try and make each day count like there is no tomorrow. Make sure your loved ones know how much you love them. Give your kids an extra hug. Make your "mark" in this world a positive one. Tomorrow is a new day, but none of us are assured of being here to do it then. Do it today.........and every "today" that you have after that.
All my best to you all,
Niki
Friday, February 09, 2001 at 02:06 PM (CST)
Happy February (groundhogs day, Valentines Day, presidents day, whatever) everyone!!
I'm so sorry it's been over a month since I last updated! You must all be wondering what happened to us!! Just busy. So, here goes............
To start off, last time I wrote, the GI doc wanted to change Brians diet to see if it would make any difference in his stools, gagging and wretching and esophogitis. We aren't sure about his esophogus, but the rest is better. It is their thinking that he may have an allergy or intolerance to milk protein, and that that has been the main cause for his severe esophogitis over the past four yrs. The best way to know whether it's made a real difference is to take a look with the scope. They may do that when he goes in later this month for some other procedures (more on that in a minute).
We are done with the brushing therapy. We have definitely noticed a difference in his interest in tasting, mealtimes, etc. He still does not actually eat anything, but really wants to taste everything we eat. The other night at dinner, he kept asking me for the "circle" on my plate. It took me a second, but then I realized he was asking for the steamed zucchini on my plate (cut in the shape of a "circle"). So, I gave it to him. He tasted it over and over.........shocked us!! When he was done "tasting", he gave it back to me........wasn't that nice of him?? hee hee He sticks his finger in whatever I am eating and tastes it. He is drinking some water from a cup, or through a straw; not a lot, but it's still more than he was doing before. He is also taking water from a spoon (like he is eating it off the spoon). The behavioral psychologist has continued seeing him weekly, and is the one who is getting him to do that. This is in hopes that we can eventually mix some of his carafate with the water and get him to swallow this medicine. It will help his esophogus more by mouth than by g-tube. He does continue to get OT at school and they have their own program they do with him to address his sensory defensiveness issues. Which reminds me, I got a lot of questions from many of you about this subject. You wanted to know what sensory defensiveness was or more about the brushing therapy, so I requested some information from Brians previous OT in Colorado. (thank you Cindy!) She sent it to me and I have sorted through it and printed some of it up so that I could send it out to anyone who wanted information on this, and the brushing program. Just let me know, and I will forward it on to you.
He has been officially off the IV cyclosporine now for about three weeks and is doing just fine without it. His last oncology visit went well; nothing new there except that we are going to see him every two months now instead of monthly. In between, Brian will see the pediatrician, and is scheduled for that at the end of the month. At that time, they will give him a tetnus shot to test his immune system. They will check a tetnus titer a month later to see what his immune system has done with it. If it shows that all is well, then they can progress one by one with the rest of his immunizations to get him caught up on them since his transplants.
Brian also saw the pediatric dentist last month. They need to clean his teeth, take xrays, etc. but feel it would be best done under anesthesia. Since he still needs his ears drained of impacted wax under anesthesia too, they will piggyback these procedures together. If the GI doc wants to take a look at Brians esophogus, they will probably try to do it at the same time. This is all scheduled for the 20th of February.
Brian did give us a little scare recently. In the past few weeks, he had been acting a lot more tired, looking pale, and had A LOT of bruising. Since it was time to see the oncologist anyway and get his labs done, we were a bit anxious to see those results. They were fine though, in fact GREAT! A friend of mine reminded me of Brians adrenal insufficiency and how these same symptoms could be a sign of trouble with that as well. Then Brian began having a bit of a runny nose, so we thought maybe it was just a cold that was causing all these symptoms. Even if it was, his steroid dose might need to be adjusted while he was "sick" to give him the "boost" he seemed to be needing. We checked with his endocrinologist, who wanted to check some of his hormone levels and told us to double the hydrocortisone until he either felt better or got the results back. One of those came back normal, and the other, for some reason, did not get run. We are repeating that on Monday, but, Brian is doing better in the meantime. The other little scare we had, was the report that the kindergarten class next door to Brians preschool class had two confirmed outbreaks of chicken pox. We kept him home as soon as we heard, and checked with his oncologist about what to do with Brian. In the past, this would have been deadly to him, and is why we were a little scared about what to do. Fortunately, and to our surprise and relief, the onc told us we could send him back to school. Since the outbreak was not in Brians room, and he had not had contact with any of those kids in over 2 wks (even then, it was for 30 min), and since Brians counts are so normal and since he is not on immunosuppression anymore, they felt he would be fine. We have been so "brainwashed" about the dangers of chicken pox to him in the past, that this is just amazing to us now that he is well enough to handle that risk. That's good news really. So, we sent him back to school.........for one day, and now school has been cancelled the past two days because of severe cold/snow. I hate the weather here! Did I tell you I hated the weather here?? Ugggghhhhh!! We never had this many school days cancelled growing up in Colorado!! I hope spring is better here than winter-----it's sooo cold! (because of the humidity) I suppose it could always be worse though, so I'll be quiet now. : )
Eric finally had his rescheduled bumper bowling birthday party, and had a great time! Got a few strikes too! The bowling alley gave him a real bowling pin all decorated with his name on it. What a cute way to "recycle" old bowling pins, huh?
Jeff and I have been getting out a little bit more (thanks to Whitneys help with the boys!) to see some movies, and will be going to the wedding, later this month, of one of Brians transplant nurses. The construction of our basement continues progressing along, and should hopefully be done in 2-3 wks. It will be nice to have that done, and have more space to live and play and relax in.
That's about it I think. I have added some new photos to Brians webpage.......although, I think my scanner needs to be cleaned or something because all of the photos have a white line through them. I have one of those all in one printer, fax, copier, scanners, so I don't know yet how to "get into it" to clean or fix whatever it is, so that it won't appear on future photos. I need to get out the manual I guess!!
I hope this wasn't too long or boring, and will try to keep you updated a little sooner next time. I hope all is well with you. Til next time, take care.
Warmly,
Niki
ndaubach@home.com
mother of Brian (almost 4 1/2yrs) born Aug '96 with JMML (and the sweetest disposition); 1st BMT 6/6/97 at 9 mos old;
2nd BMT(stem cell actually) at 2 1/2 yrs old on 6/11/99; currently no evidence of leukemia cells
but recovering from transplant complications (GVHd) and developmental delays.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Also mother to Eric (6 yrs) born Jan '95 with the prettiest blue eyes, AND NOW A BIG KINDERGARTNER!, and wife of 15 yrs (June '85) to the one who is forever in my heart, Jeff. : )
and owner of one gray cat named Quincy who will be 10 in November, and who doesn't get enough attention anymore!
Saturday, January 06, 2001 at 01:12 PM (CST)
Friday, December 15, 2000 at 12:35 AM (CST)
Happy Holidays Everyone,
Hope this update finds you all well and happy and enjoying the season. I think I have lots to report this time, so bare with me, if you can, through to the end.
Brian saw the oncologist last week, and most everything was fine. His monocytes were a little high, so they said they wanted to check his DNA fingerprinting and see the status of the donor cells..........the onc. didn't seem overly concerned that there was a problem, and said that everyones monocytes jump around and that we might have just caught Brians when they were higher......but felt better checking for sure. He assured me that even if the percentage of donor cells was decreasing, that they wouldn't change anything right now. He recommended going ahead with the wean of the cyclosporine (the drug used to treat Brians graft vs host disease), and if all goes well, Brian should be off of it by Jan 14th!! Keep your fingers crossed!! (If he gets off of this, maybe,.......... just maybe, his hair will grow in thicker now and not be this wispy, black, wirey, thin, unmanageable, uncontrollable, wild hair he has now!!!)
We got the DNA results this week, showing STILL 100% donor cells........!!!! Phew!! Not too worried, but just enough to feel relieved to still hear that news!! Just barely let the thoughts of Brian having his leukemia cells back cross my mind, and just barely thought about what that would mean for him and us................pushed really hard to keep it WAAAYYY in the back of my mind, and focused on thoughts of this being nothing bad........guess it worked, huh??
Last Friday, Brian went to the feeding clinic for the first time for an evaluation about his feeds and perhaps finding a way to get him to start eating by mouth. I'm afraid there were no miracle, easy steps to get this to happen quickly. They said in kids like Brian it is a v-e-r-y s-l-o-w process, and after watching him and talking over his history, there were many directions they could go. It was decided however to try two things first........one, is to see an independant OT to perform and teach us to perform a procedure called Brushing therapy I think. It is an intensive, deep tissue massage type therapy, that uses special brushes to help with sensory integration. I don't know much about it yet, but will learn more about it soon. Supposedly, though, it should help desensitize Brians oral defensiveness and teach the brain and nerves to accept more in the way of textures and sensations to his mouth.............I think......like I said, I don't know everything yet, but, that is what I am understanding...........the therapy is pretty intensive though in that, it's not hard to do.......takes about 2 min to perform, but, must be done every 2 hrs every day for about 2 wks or so, to make this work. I'll explain more as I learn myself.
The other recommendation by the feeding clinic was to have Brian see a behavioral psyschologist, to help with issues related to getting him to try to eat by mouth, or take some of his meds by mouth, without making it a more negative experience. Another thing I need to learn more about. Both of these things we will begin after the holidays are over.
Brian finally followed up with the genetics doc/dept here on Tues as well, and we got some good news there. There were some tests being done in Denver to look for a couple of syndromes. One was called UPD-14, and the other was PWS (Prader Willi Syndrome). The UPD-14 was inconclusive, but basically negative, and it was recommended that we continue the search to rule out PWS. Well, the geneticist here does not feel Brian has this, and does not recommend continuing the testing to rule it out..........he is confidant enough that he doesn't have enough of the symptoms to warrant the testing, and feels comfortable letting Brian go ahead with feeding clinic and trying to get him to eat. (basically, PWS is a syndrome where these children start out with multiple feeding problems, failure to thrive, g-tubes, etc, and then progress onto completely the opposite problem, overcoming the inabilities to eat by overeating and becoming obese and having behavioral problems in regards to food--long story short) So, the last thing we wanted was to encourage Brian to eat and get excited about eating everything and anything (after NEVER eating) only to end up with feeding problems at the other extremes.......the doc said as far as Brians chromosomal abnormalites go, there are no answers at this time, or no exact diagnosis to give. He said, if and when the time comes that technology improves even more than it has already, they may be able to find more answers, but for now, just move on and not worry about this aspect of his life. This geneticist is also an endocrinologist, and talked to us about Brians adrenal insufficency, growth, etc. and feels like the steroid replacement dose he is on now, is adequate and wouldn't mess with any of this for ahwile.................he does want to check an ACTH level on our next labs and also wants to make sure that Brians hearing is tested. If that is normal, then he will see him either as needed or in a year.
As for the rest of us, Jeff and I got out for dinner on his birthday last Friday (thanks to Whitney for taking care of the boys!!) although, I was on the verge of some nasty bug. I made it through dinner, but the wkd was shot and Jeff had to do Mr. Mom duty big time!! Laundry, cooking, kids, errands, you name it while I recovered.........I don't know what I would have done without him! I don't know what it was, but I was bit by something bad!! Felt better after a couple of days, but then that was followed by pink eye, and now the obligatory winter cold sore!!! Fun! Doing better now, but hope this is it for me for the season........thank goodness I had a flu shot, cuz I'd hate to think how bad it could have been otherwise!! Even though I wasn't at my best, I'm glad we got a chance to go out alone together, even if it was only for a few hours. We do have another opportunity as Jeff has his work Christmas party
this Sat...........cocktails, dinner, dancing......whew, big time outing for US!! Looking forward to it though and to meeting his co-workers and having adult time, dressing up and feeling like more than "Mommy" and "Daddy".............
The boys are doing fine, and have holiday programs at their schools........Erics is tomorrow, and Brians is next Tues. Looking forward to seeing them both. This is only the beginning of many, many school programs, I'm sure!! I can feel the pride beginning to surface already!!
We are beginning a remodeling project now too........I know we just moved in only two months ago, and the house is only 6 yrs old, but we are having the basement finished. It will give us some needed extra room and will begin next week and hopefully be finished in 6-8 wks. Keeping fingers crossed on all of that going well too!
We intend on sending out holiday cards of some kind, but they will probably be late again........the photos we were hoping to use did not turn out, so we will try to catch a better shot and send them when we can. So, please know, that until then, we send our love and hugs to you all throughout the season and new year.
As I close, this very long update (sorry), I wanted to just add one more thought. Four years ago, on August 24, 1996, our second son was born. It was apparent after his birth that something was not right........and many tests were done to rule out this infection or that. Brian was kept in the hospital NICU for one week while they searched for a diagnosis and treated him with antibiotics to cover some of the possibilities. At seven days old, we were referred to a hematologist/oncologist and we took Brian out of the hospital to go and see him........Dr. Thomas Smith. He was wonderful, but, being that Jeff and I were both in the medical field, we knew what seeing this kind of specialist meant...........and held our breath while we talked with Dr. Smith. At that time, he told us, that there was a 90% chance that what Brian had was something called a leukemoid reaction.........something that sort of mocked leukemia (gulp), but that should correct itself within 6-8 wks (yea!). He said, that there was a 10% chance, that it was actually leukemia itself (bigger gulp), but that it was SO RARE to be born with leukemia, it was more likely the other, and that we needed to wait and see.............watch blood counts, watch Brian and follow closely. Well, after 4 mos, and some improvement in blood counts, we thought perhaps he had been right about the 90% diagnosis........but Brians feeding issues just weren't resolving and he was basically failing to thrive. It was decided to get more aggressive with his feeding, and put a feeding tube in him under anesthesia, and while he was there, do a bone marrow biopsy to find out once and for all whether Brian had leukemia or not. We anxiously and nervously awaited the news of those results, and on December 14, 1996........four years ago today..........we were given the devastating news that he did indeed have leukemia. Our 4 mo old baby had a disease that would take his life within 9 mos if we did not treat him. The type of leukemia he had required a bone marrow transplant as the only possible cure, and even that was not guaranteed a success..........if he survived, a second transplant might be required..........well, here we are today.........4 years later, and he did have that transplant. He had it, and it didn't work. He had multiple organ complications and almost didn't survive, but after fighting for 2 years, he was strong enough to go through a second transplant.............that was a year and a half ago, and he is still here. He is behind developmentally, but he is progressing and catching up and SURVIVING!!! Not only is he surviving, but he is actually thriving. There are so many people responsible for this.......his many doctors, nurses, techs, and therapists in two different states, family, friends, caregivers.............but mostly due to one special person who decided to join a marrow drive in his town for a young girl many years ago..........a girl who ended up not needing a transplant and who survived............this special person ended up matching perfectly to a 7 mos old baby boy and agreed to give this baby a chance at life by donating his marrow............a chance you know, did not guarantee success, but a chance nonetheless at life..............and even though the transplant did not work enough to cure this baby initially, this person agreed to donate AGAIN.......this time his stem cells; not just one chance at life (how many people even get that ONE chance?!), but a SECOND chance for a little boy who was then 2 1/2 yrs old. This person is our angel on earth, and we will be indebted to him forever, for giving our little boy a "chance" at life.............he gave him the gift of life. And now today, 4 yrs after his "official" diagnosis, this little boy is alive, and leukemia free, and I want to say a special thank you, once again, to you, Mark, for the gift you gave to us, in Brian. You did an unselfish and wonderful thing. We can never say it enough..........Thank you.
I can easily recall the emotions I felt that day 4 yrs ago, but I don't look at this anniversary anymore as something bad.........it was only the beginning........the beginning of a new life.......or a chance at a new life for our son. It's a reminder of how far Brian has come, and gives a hope to us of all the possibilities for a brighter future. It's what we hang on to.
All the best to you this holiday season.
As always,
Warmly,
Niki
P.S. there are new photos added to this webpage
Friday, November 24, 2000 at 06:46 PM (CST)
Hi all,
I hope your holiday was nice. Ours was just us and quiet. It was the first time in many years that we have all been together, not working or in the hospital, so it was a nice change. We almost didn't make it though, as we had a little problem with Brians g-tube that we were able to hold off until today. It has been leaking lately, and apparently the balloon that holds it in was leaking, and finally broke. I found it almost out of him yesterday, pushed it back in and taped it down to hold it in. Today, I took him in to the pedi-surgeons office and we replaced it with a new one. Now, back to good as new. Phew!
Brians GI scope went very well last Friday.....procedure was very quick. They found his esophogus still open and did not need to dilate him. The biopsies came back yesterday and showed that his stomach and small bowel look great, but the esophogus is so raw it is consistant with someone who has anorexia.........probably contributes to his not wanting to eat.......so they wanted to try a new medicine to cut down on the high stomach acids......prilosec. This is the one we tried back in the spring, and Brian ended up stooling out so bad, ended up in the hospital for a week with dehydration. We were told back then, that there was a chance that the medicine caused the diarrhea, but it was not a regular side effect. But because it is much more effective than zantac, they wanted us to try it again here. We started Wednesday and have been watching closely since then. This morning the diarrhea seemed to increase quite a bit, so we didn't give the morning dose and have been watching him all day. So far, so good. The GI nurse explained that this medicince works so well to stop GI acid, that it sometimes also wipes away the normal flora in the gut which allows the normal bacteria that lives in your gut to become more active, and then causes stooling. This may be whats happening with Brian, so we'll just have to watch him closely. If we can't give this med, we will just have to increase the zantac dose instead. GI said everything else looks good though and that we are going to begin working with the feeding clinic. We are also going to start trying to get Brians carafate down by mouth instead of through his tube so we can coat his esophogus and hopefully make him feel better so he might be more willing to swallow. This task is not easy, and he doesn't like it, but we will keep trying in hopes that it will help heal the damage the reflux has done. Brian also saw the ENT (who I LOVED!) this past week and he wants to drain Brians ears of the all the wax that is impacted in there, and also do a hearing test on him at the same time. This needs to be done under some form of anesthesia though so it will not be so traumatic for Brian. It's too bad we couldn't have gotten it done last week when Brian had his GI scope, but schedules didn't work out for that. So, if something comes up in the next month that requires anesthesia, we will slip the ENT procedure in there as well, or we will just have to set up the procedure on it's own. Whenever we do it though, I hope it helps lower the volume of Brians voice, cuz it's pretty loud and irritating the way it is now! Plus, it would be nice to know that he is hearing as much as he should be, and just not assume that he hears cuz he responds appropriately most of the time.
He is continuing to do really well at school and with his therapies........learning and doing so much more than he was before. It's been a really positive move for him. We updated his IEP (individualized education plan or something like that!) on Monday which looked at all his strengths, as well as weaknesses, and we set new goals for the next year to work on with him. We are also finally getting some people set up to do respite care with Brian so that I/we can have some breaks from all of his care. Hopefully it will allow us to begin to have a more "normal" life again. These people, along with the neighbors who have been helping out as well, are a true blessing.
Well, I guess that's it this week. The weather warmed up a little the past few days, and Jeff and Eric went off to Lincoln today for the Nebraska/Colorado game. I figured Nebraska would whip the Buffs, but still secretly hoped for an upset (secretly, cuz these Husker fans around here take their team pretty seriously!!). Well, I almost got my wish! It was a close and exciting game, and Nebraska won it in the last seconds with a field goal............I guess either way I won, but it's probably better that the Huskers won, cause I have to live with all these fans around me everyday now! (hee hee)
We go see the oncologist next week and will probably begin the cyclosporine wean after that if all continues to go well for Brian. I hope it works and that the wean proves that Brian no longer has GVHd. This would be another BIG step toward a normal and healthy life for Brian.
I hope this finds you all well and happy.
Take care.
Niki
Wednesday, November 15, 2000 at 09:34 PM (CST)
Hi all,
This is a quick update on Brian and our goings on.
Since I last wrote, Brian saw the GI doc and oncologist.
The oncology appt was fine. We will see them again in a month (well, now it's more like three wks!) If Brian is doing ok, they will begin the wean of the GVHd drug-cyclosporine.
The GI doc recommended some studies to see where we are now in comparison to previous studies, etc. Brian had an UGI and barium swallow done on Monday, and did surprisingly well!! Especially for someone who doesn't "eat or drink". Before we got there, I explained to him what they were going to do (hoping that he understands enough of the things we tell him, even though he can't really express that understanding) just like I would talk to Eric. I figured, what did I have to lose? I don't know if it worked , as he wasn't any less aprehensive going into the x-ray room, but he was much more cooperative than I would have normally expected. He didn't fight it. He fussed and didn't like it, but he followed the directions they asked of him. Since he doesn't eat or drink, they put the barium in a syringe and just squirted small amounts into his mouth....he worked it around in his mouth and swallowed, and they were able to get some good pictures. The good news is that he is still protecting his airway when he swallows, and the esophogeal stricture that we've been following for the past several months is open..........it has not closed up again. He did show some reflux though of barium getting back up into the esophogus once it went into his stomach, so his Nissen may need to be tightened up at some point again. In the meantime, he is now scheduled for another upper GI endoscopy, to take a look around and to get some more biopsies of the esophogus and stomach. At least they won't have to dilate him this time (we assume from the UGI study). He is scheduled for this on Fri (the 17th) at 9:30am under general anesthesia. He'll have it done at the Univ. where he had all his transplants and related treatments. And since Jeff works there too, he can keep an eye out for what's going on behind the scene while I'm out in the waiting room!!! Hopefully once we get the results back, and have some answers, we can move forward with perhaps a feeding clinic and ideas on what to do to get him to start eating.............I know this is a slow process, but a start would at least make us feel like we're doing something!
Brian is also seeing an ENT next week about his ears being impacted with wax. The volume of his voice has gotten soooooo LOUD, that we are beginning to wonder if it's not related to having so much wax in there. Maybe he can't hear how loud he is when he vocalizes things. We've tried several things to get them cleaned out, but nothing has worked so far, and the pediatrician thought it was time to get someone involved who was more specialized in this area. It appears that he hears ok, but maybe not how loud his own voice is.........ya know? Like when you're ears are plugged and you feel like you're talking in a tunnel? Nooooo, that's kind of backwards.....I don't know what I mean........but, we're hoping that this is why he is so loud and not just cuz he's making up for lost time for all those "silent years"!!!! It's getting a bit on our nerves!! He's also starting something with Eric that is really irritating and we are having trouble getting him to stop too........he sort of head butts Eric whereever they are. Or likes to sort of lean into him a little too much and "push" with his whole body.......not sure what that's about, but, it really hurts when he does it, and it's NOT acceptable behavior........and although he understands "no" right at the second we tell him no, he forgets it a second later and does it again.........so, it seems we're dealing with behavioral things with him for the first time in his life too!! Just the "normal" kid things......isn't that refreshing?!!?
Well, I guess that about wraps it up around here. The weather has been cold, cold, cold lately, and as I sit here and type, I am trying to keep the fire stoked that I started a little while ago to warm things up a bit. We had a big night Monday as Eric was allowed to stay up late to watch Monday Night Football. It was our Broncos against the Raiders (big rivals!!-boo hiss!) and it was an exciting game that came right down to the wire.......the Broncos won it with 4 secs left with a field goal! Of course we were thrilled, but with the change in time zone for us after our move (mountain to central)had us up til 11:30 instead of a bit more reasonable 10:30!! It's a good thing we didn't move into the eastern time zone, or the kid wouldn't have seen it to the end!!! He was a little tired after lunch the next day, but still thought it was worth it to see the game! Especially since they don't air the Broncos here! I have to say, though, that it was the first time since we left that I felt a little melancholy about my old home..........when they showed the stadium and skyline and the lights of the city, I got a lump in my throat. I allowed myself to miss "back home" for the first time since we left. I've missed the people from day one, but, hadn't really thought about the "place". It makes it kinda hard sometimes when you see things like that to remind you of what you left behind.
Anyway, it's all ok. We are where we need to be. I'm ok with that. I hope I haven't forgotten anything, but, if I have, I'll try to include it next time along with news and results from the upcoming scope and biopsy.
If I don't get back to you before next week, or miss any of you who leave for the holidays, let me say now, that I wish you all a wonderful and warm Thanksgiving. Give extra hugs and love to those around you.
Take care,
Niki
Sunday, November 05, 2000 at 10:14 PM (CST)
Hi all,
Just trying to catch up. I'm a little behind.
Things are going well. We are official now.........plates, titles, registration, liscenses............all Nebraska!
Brian saw the oncologist again for follow up 2 wks ago, and all was fine. His cyclosporine level was a little higher than they would like, so, even though they are not intentionally weaning it, they did lower the dose a bit to make it better. We will check another level tomorrow and see them on Tuesday. We all also got flu shots while we were there a couple weeks ago.
After our visit this week with the onc, we will go back to monthly visits instead of every 2 wks. This week Brian will meet with the GI doc here, and evaluate what he wants to do with Brians GI problems. The nutritionist did change Brians formula from pediatric vivonex to peptomin jr. So far, the switch has gone well, but it has certainly changed the odor of his diapers!!
Brian and Eric both met with our new pediatrician. He and his staff/office seem ok/pretty nice. It's hard to live up to what we had before in Denver. I'm not sure anyone could possibly compare to the pediatrician we had there, but, I feel ok with this initial meeting that both boys' care will be good. It's certainly convenient! 1.5 min from the house vs the 25-35 min when we were in our Denver suburb!
Even the hospitals, if needed, are only about 15-20 mins, vs the 45-60 min before. There is something to be said for the convenience of living in a city/community.
We still need to see the geneticist here and make an appt with a pedi dentist for Brian.
Halloween was fun this year being in a regular neighborhood. Eric was a vampire bat (with wings and everything!) and Brian was a little puppy dog (with a button on his chest that barked if you pushed it!) although, the weather started out rainy so Brian stayed home with Jeff and handed out candy. He really got into that!! I took pics but haven't finished off the role yet. I have some others too with Brian off oxygen, so as soon as I finish it and develop them, I'll put them on his website.
Eric is doing really well in kindergarten and enjoys his mornings off to play with the neighborhood kids.
Brian started his preschool about 10 days ago, and is doing great! I drop him off after I drop off Eric, and he goes every afternoon for 2 1/2 hrs. Omaha public schools offers transportation for special needs kids, so they bring Brian home every afternoon (since he and Eric get out at the same time, and I can't be in both places at once!!). It's so cute! They drive up, and honk, and I go out to get him. When I open up the door for him, he's saying "mama, ok.....mama, k". Then the driver and his assistant say "bye bye", and he says, "yie, yie,(bye-bye) see-ya, yie, yie, see-ya", then he walks up the sidewalk with me to the house like this is old hat and he's "home from school".................like he's done this a million times before! He's already improving on things that he couldn't do before, like making a single circle when he draws instead of round and round scribble. He now also can make seperate single up and down lines, and he loves to color! It's getting less and less like scribbling, and a little more focused. His teachers say he fits in really well, and one of the "regular" kids in his class has really taken Brian under his wing.............his name is Keegan, and he takes a special interest in Brian and helps him with things that he has trouble with. The first few days I took him to school, he was so excited, and didn't care about leaving me. Then he kind of got upset after that and cried when I left............but the teachers told me as soon as I was out of sight, he was fine. Now, when I take him, he just turns and says, bye bye (yie, yie), blows me a kiss and turns back to go with the teachers. They (the therapists-OT, PT, and Speech are all on site and included in his preschool education) are also using Brians communication device at school and programming new things into it that he is learning at school, so we can continue teaching/communicating with him at home. The system seems to be set up perfectly for someone like Brian. It's such a relief!
I was a little nervous about taking him somewhere new and just "leaving" him there (even though I knew he would be in good hands), but I was also anxious to have some time to get some things done for myself with both Eric and Brian gone in the afternoons (especially with all their is to do after moving!). I thought I would have so much time! HA! By the time I get home from dropping them off, I have 2 hours to myself to do WHATEVER (groceries, errands, hair cut, appts for myself, unpack things at home, get dinner plans going, paperwork/bills at home, etc, etc) and the time FLIES!! It seems I'm just getting going, and it's time to leave to pick up Eric already!! Oh well. I'll get used to it hopefully. At least it's 2 hrs to myself.
Jeff has his first call shift tomorrow. I think this will happen about every 4-6 wks. It means going into work at 3pm and staying at the hospital til 7am the next morning. Then the next day he has off. Not too bad. Otherwise, he works M-F only. And call is never on a wkd, if I remember correctly. I think he's liking it.
Well, I guess that's about it. Hope this hasn't been too boring an update.............boring is kinda nice though............better than exciting bad news, huh?
Hope all is well with you all. I have heard personally from many of you and have not had time to respond to all of you, but will do so as soon as I can.
Take care.
Niki
Sunday, October 22, 2000 at 10:35 PM (CDT)
Hello everyone!!
It's been a month since I last posted, and one week since getting my computer out of storage. I have briefly had time to read, but not much time to post, so I apologize for the delay. I hope you all have been doing well.
Well, we have been in our new home for three weeks now and most of the boxes are unpacked............there are still some, but not really important day to day things. Since arriving in the flatlands of Nebraska, Brian has been off oxygen completely with no signs of trouble. He is free as a bird now, and quite the mobile little guy. He no longer gets stuck everywhere he goes.........only gets into trouble more with falling, and exploring, etc. He is getting lots of bruises from his new found mobility and adventurous spirit.........once again, I say, it's a good thing he has normal platelets now!!
We got out of Colorado with only one problem.........the day the movers were loading the moving truck and emptying the house, we found a leak under the kitchen sink ( I say "we", but it was really ME, since Jeff was driving back from Omaha to meet up with us). It came an the worst time, and I had to call on our neighbor for help.......(thanks Keith). He was able to fix most of the problem, but the rest had to be taken care of by a plumber..........emergency call...........lots of money!! But, it had to be done. Fortunately, that was the only setback we had in our move. Everything else went pretty smooth. Including the weather........the fall here is really pretty decent.........much like Colorado, and not a lot of humidity. We've met a ton of our neighbors...........such nice people.........really "neighborly".........five deliveries of cookies, a dinner of chili and rolls, and a carved out pumpkin with flowers planted inside! Plus offers of help with anything else we may need. It is so ironic finding more in common with some of these people than I had expected.........you tend to forget that you aren't the only people going through difficult times til you start talking. Our next door neighbors have four girls ranging from 9-17yrs old. They offered to have the older girls babysit if we needed it.........ironically, they have been through the cancer world as well. Their 9yr old was dx with leukemia when she was 5 yrs old, and has survived. They even said their older girls know how to care for central lines if we need help with that with Brian.............my mouth dropped open and I thought, "oh, this is WAAAAYYY too convenient!!" A neighbor across the street had a child with special needs about 10 yrs ago that passed away at 19 mos old, so we got to talking too about similarities when your children are critically ill.........another neighbor is an adult ICU nurse who stays home now with her 2 yr old son who was a premie and had some medical difficulties and is still developmentally delayed...........so, the list goes on of people you meet who REALLY do and CAN understand what you have been going through. It is really helpful to know you are not alone. Anyway, our experience here so far, is very positive. It just seems there are lots of signs that we did the right thing for Brian and our family by making this move.
Brian saw the oncologist on the 10th of Oct, and is doing well. His counts were fine, and they have taken him off one of his GVHd drugs. It didn't require any weaning, and was the one that could cause diarrhea, so we stopped it. Brians stools have gotten better and we have finally gotten his feeds up to the volume he was at over a year ago before his second transplant. We will have to meet up with the nutritionist soon to see what the next step will be to get him eating by mouth. The onc will start weaning the cyclosporine as soon as they feel things are ok with the other discontinued drug (I think.....we see him again this week, and will check on this again). It sounds, though, as if the cyclosporine wean will go over quite a long time.......if his stools and diarrhea continue to be ok, though, we may be able to switch his IV dose to oral and then not need his central line ANYMORE!! This I can't even imagine! One thing at a time though.........we'll get there. Look how far we have come with everything else!
Brian has been approved for special funding in Nebraska which allows him to have a medicaid waiver here........similar to the one he had in Colorado which helps pay for prescription co-pays, diapers, formula, etc........most anything that is not a covered expense with his insurance provider. The state also provides services to pay for child care or respite so that I can get a job if I want, or so that I can get a break (or Jeff and I can get away together). We can use people we already know here to provide these services or use someone from the list they provided us. I am looking into this benefit. He has also been approved to go to preschool outside our home. He starts this week, and they will provide transportation home from the school (as, it finishes the same time Erics kindergarten finishes and they are not really anywhere near each other). They both go everyday in afternoons (Eric already started and is doing well.......already had his first progress report!). I am anxious to see how Brian will do in this new setting.........he needs the social interaction, and I think it will help him to see other kids doing things and begin mocking them. We visited the school and he jumped right in and loved it. I was initially worried that there would be some communication breakdown, as he doesn't really talk, but one of the teachers immediately picked up on all of Brians signing and few spoken words, and they carried on without perfectly!! There is a nurse at the school (this school handles LOTS of special needs kids) full time and she will take care of one of Brians feeds while he is there. The group he will be in has all high functioning kids like himself, so I hope this will help him progress even better. They will also provide all of his therapies every day, so there will not be a need (as long as these therapies show progress) to see his therapists separately in our day to day schedules. Of course, there is a risk that being surrounded by up to 12 kids could affect his immune system and have him getting sick, but everyone feels that since he is not COMPLETELY immunocompromised, the risk is worth taking to get the advantages of this program. Keep your fingers crossed though.........we ARE heading into the cold and flu season, so hopefully, he can get through without any negative effects.
Well, I guess that about catches us up. We certainly miss so many of you that we left behind, and hope that you are all doing well. We also miss being able to see our Denver Broncos play here (although, with some of the games lately, we haven't missed much!!), as they don't broadcast them here very much. They aren't having a very good season.........neither are the Colorado Buffaloes..........the flip side though, here in "nothing but Nebraska Cornhusker football", we get plenty of news and views of the undefeated Cornhuskers!! I guess there's THAT! (hee hee hee) They are pretty serious here about their "huskers"!
Anyway, guess I'd better close for now. Hopefully, I will be more available now to keep updated and responding back to those of you who are writing. I really missed my computer while it was in storage, but, it's probably a good thing I didn't have it back as soon as I wanted it, cuz it would have been hard to get anything done around here when I should have been unpacking!! ha ha
Look forward to catching up with all of you again.
Take care,
Niki
Friday, September 22, 2000 at 09:52 PM (CDT)
Hi all.
I've decided to send my pc with Jeff back to Omaha on Sunday instead of next week when we make our final trip. So, I will check messages one more time by Saturday afternoon, and then pull the plugs and pack it up!!
A quick update:
We made it to the Leukemia walk last night, and had a small team this year (10), but thank all those who joined us, and those who sent in donations that could not come. The walk was much bigger this year than last, and although we had rainy, cool weather, I think it was still a big success. Brian fussed a bit while we waited to start, but once it started, he was happy as could be. My mom pushed him in the stroller, and he laughed hysterically everytime they hit a bump in the road.....he thought that was so fun!!
We did get some results from the genetic clinic finally, and the results are not completely clear for what they were looking for. They are now looking at another possible chromosomal abnormality that, should we agree to further testing, will be done once we get to Omaha and followup with the genetecist there. I looked up the disorder on the internet, and was not too happy with what I read, but, will try not to "cross that bridge" unless we come to it. Sometimes a little knowledge is dangerous, and yet, if it becomes something we need to get involved with, knowledge can be empowering as well. Anyway........
Today was the last day of all of Brians therapies until we get to our new home. I did find out that a program is being set up for him at a school and he will probably be going 5 half days a week (eventually, anyway) to a preschool setting that includes all his therapies. I am both excited and nervous about this. So much good can come from it, but so much change too!!
So, I guess that's it for now. I'll check in with you all in about a week or 10 days (after tomorrow anyway), and I hope that until I hear from you, you all will take care.
All the best,
Nebraska, ready or not, here we come!!
Niki
Monday, September 18, 2000 at 11:13 PM (CDT)
Hello everyone.
I have a few minutes before Brians last feed of the day goes off and thought I'd better get busy on his update, as it's been awhile.
He is doing well, thankfully. He did have another GI scope last Wed., and it went pretty well. They were able to dilate up to 16cm this time, but there was more bleeding than in the past and he had more esophogitis than before too. He still does not eat of course, but has taken a slight interest in putting a few things to his mouth......only salty things though like pretzels, potato chips, goldfish, french fries, or saltines. Nothing sweet, sour or spicy. Today his speech therapist tried cheetos, and he seemed to like tasting those! He was very orange when they were done! He doesn't eat these things, or even bite them, but just putting them to his tongue and in his mouth slightly, is such progress!! He's also doing more with his mouth like blowing whistles, cazoos, etc that help work his mouth.
We saw the oncologist today for the last time
Things are winding down now with our move. Jeff left last Thurs and started work today. He will be home Fri to do some work on the house before going back Sun, and then the movers come Mon to pack. This week I am doing the last of the sorting, tossing, and packing of things we are taking ourselves, and fortunately have my mom in town to help me out with Brian so I can get things done without interruption. I have taught her how to do his feeds, and although I think she has it down and is doing fine, she is less sure of herself. I think that is to be expected, but it's been a great help. I got alot done yesterday, and intended to continue today, but my plans changed somewhat today when Eric woke up this am with some kind of eye infection and I had to keep him home from school. He's started on eye drop antibiotics and will hopefully return to school tomorrow. My mom will be here through Thurs night, so I will be scrambling the next few days to finish what I can while I have her help. I know it must be exhausting for her to keep up with Brian and all his needs, but it's only temporary and SOOO HELPFUL!! She will be here for the leukemia walk on Thurs night as well and will be joining us. I can't believe that is approaching so quickly now!! I've heard from many of you about the walk, and appreciate the support from those of you who are joining us. I also have to share with you the shock I had when I received a check of support from (I won't name names) a friend of my parents..................I figured it was the usual kind donation of $25-50. But my jaw dropped to the floor, and I screamed out "OMG!!" and yelled for my mom to come quick when I opened it up to see it was made out for $500!!!!!!!
Prior to that I was feeling kinda bummed that because of our move I couldn't devote the time and energy to fundraising for this event. Now, with that INCREDIBLE donation, I don't feel so bad!!! Can you believe what an angel this was!!??
Anyway, I guess that about catches us up for now. I'm not sure when I will write again. I'm keeping my computer with me til the day we leave and taking it with me!!! but may or may not have time to write again til we get settled. I apologize to those of you who are keeping in touch but who I haven't been able to stay up with lately with all that is going on. I do appreciate your notes, and though sometimes I have a few minutes to read, I just don't have enough time to post. I hope you and your families are all doing well, and look forward to being in better touch after our move. (I did add a recent family photo to the website. We haven't had one taken in so long, it was about time!!) I also hope you all received and liked the "Welcome to Holland" story. A good friend gave it to me and I just thought it explained perfectly what our lives are like since beginning this journey with Brian.
Take care all.
Niki
Friday, September 01, 2000 at 10:13 PM (CDT)
(as written on Aug 30, 2000)
Good morning everyone,
I hope everything is well with all of you. Things are falling into place for us around here, but we still have so much to do yet. It's getting a little stressful. I'll be so glad when we are done, and moved and settled again. This in between stuff really puts you out of sorts, you know?
Well, Brian had his GI scope and dilatation last Wed, and did very well. This time, when the doc went in to look with the scope, the stricture had opened up all on it's own to over 15 cm. The last dilatation over 3 wks before, he had to dilate it to 12cm before he had to stop so as not to risk a tear or bleeding. So, how it did it on it's own, I'm not sure. We will do this one more time before we leave (I know, I said that last time, but this is really it, til we get to Omaha). I took him down for the procedure, and Jeff met me down there, and brought him home. When they got home, Brian was acting as if he had never just had anesthesia.....goofing around, active, playing........he bounced right back. However, I have a feeling that the anesthesia affected his sleep patterns for the next few nights, as he was up several times a night and early in the morning, not wanting to go back to sleep, and needing a lot of comfort to do so......it was as if he was scared or something.....I thought I was going to lose it though for those few days without sleep. It seems to have gotten better since, so that's why I'm assuming it might have been anesthesia related. I have a feeling though, that he is also beginning to feel the affects of what is going on around him with the move, etc and needing some reassurance and security. This last time that we went to Day surgery was the first time he has EVER gone anywhere hospital/doctor related that he acted like he remembered it from before and didn't like it. The minute we walked through the doors there, he started fussing and saying "no", he didn't want to go in.......new experience for us.
Anyway, I'm hoping that the worst of his medical experiences are behind him and that what is left in the future will not affect him as much as the things he's already been through would.
The day after Brians scope was his 4th birthday (Aug 24th) and we just had dinner here, a cake and some gifts. The problem was keeping him awake (at 6pm!!) to celebrate with us! He was so tired from being up so much the night before, that he couldn't keep his eyes open! We managed to "revive" him enough to get him to blow out the candles, open his gifts and get a bath, and then he was OUT for the rest of the night!! It's a good thing he doesn't really understand this whole birthday thing yet, or he might have thought this party was a bust! He reached out and touched the cake excitedly, until he realized it was NOT something he wanted, and then tried vigorously to get that "stuff" off his hand and fingers.....so there was no way we were going to get him to even try a bite!! Oh well....maybe next year he will be eating and can enjoy cake!
We do have a major (good) change coming up with Brian. We spoke with the pediatrician about Brians feeds and TPN. We have gone ahead and added a sixth feed to his day, and are close enough in total daily volume to the goal, that we can go ahead and take him off the TPN. So we are weaning the TPN down every night by 50cc til it is 0, just to make sure he does ok, and then hopefully by Mon Sept 4th, he will be DONE WITH TPN!! We will then continue to increase his feeds from the current 125cc per feed to the goal of 150cc per feed to get him where he needs to be with his daily caloric recommendations. I'm hoping this works out ok, as it would mean we would not have to travel with his TPN, and would no longer have to keep and maintain all those supplies needed for TPN. But best of all, his body could be done with the potential long term side effects that TPN can cause. He's been on it over a year. Fortunately, his liver and heart do not show signs yet of that potential damage. So, wish us luck that this works out.
Everything else is fine. Eric is enjoying kindergarten and doing well. Brian is making up for lost time in the exploring and curiousity department........starting to climb up on chairs (and falling off!), etc. All I can say is thank goodness this new adventurous Brian is not having a problem with platelets, or we'd be in a world of trouble!!
I guess that pretty much catches us up. For those of you who are local, the "Light the night" leukemia walk is coming up Sept 21st at 7pm. I initially thought we would not do this again, as we were moving, but since it is before we leave, I think we will go ahead and go......there's only so much packing we can do, since the movers are doing most of it, so, there's really nothing holding us from going. However, I am not going to do the organized function that we did last year. I will sign up a team again- - "Brians Believers 2000", and if any of you want to join us there again, that would be great. If you don't, or can't, that's fine too. Like I said, I just don't have the time to organize it this year. If you'd like to make a donation on behalf of his team, that's fine too; just be sure to tell them you are donating towards "Brians Believers-2000". For information about the walk, contact: The Leukemia & Lymphoma Society Rocky Mountain Chapter 621 17th Street Suite 320 Denver, Co. 80293
303-293-8300 or FAX 303-293-9020 or WEBSITE: www.lightthenight.org or call your local office if you are not in Colorado. For those of you who were there last year at the very first "Light the Night walk", you know it was an awesome experience.......seeing all the red balloons illuminated in the night in support of all the loved ones who are suffering this disease, or who have lost the battle........and all the white illuminated balloons carried by patients themselves. Last year, Brian was just out of the hospital and too sick to go to the walk. This year, (fingers crossed) he will be WALKING FOR HIMSELF!! What a site that will be, and what a lump I will feel in my throat at THAT site!! Our chapter raised $60,000 with over 500 walkers last year!! Quite an accomplishment for a first time event. The cool thing about this is that this event happens across the country all at the same time!! (so, if you want to participate in your own state, you can!) That's a lot of illuminated balloons!! Anyway, thanks to those of you who choose to support this...........there is no pressure on any of you.........I'm just sharing this with you, as many of you have asked me about this.........we will be there regardless.
Thanks again, take care and have a good week/weekend.
Niki
Saturday, August 19, 2000 at 10:19 AM (CDT)
Hi again,
I just thought I'd update real quick on Erics experience at school the other day when I thought he was crying and alone......turns out I was wrong (thankfully) and he WASN'T crying.....he said he was just cold and trying to decide what to play on next.......I went up to have lunch with him at his school yesterday and stayed to observe for an hour or so.......they had recess after lunch, then quiet time to read on their blankets, then they went to gym.........let me tell you, I now have a much better appreciation for teachers and what they do all day....I know it was just the first week of school, and things might not be as routine yet as they would be in a week or so, but, I was EXHAUSTED after just WATCHING them...........so much energy and activity going on all around!! and of course, some of the kids are better behaved than others........talk about needing patience in that job!! Sometimes my patience runs low with just Eric and Brian at home.......a class of 15-20 or so would really go way beyond my ability to hold it all in I think!!
So, my hats off to any of you who teach or work with large groups of kids! Bless you!!
Anyway, that's it til next time........I just got a lot of responses of concern and support about my concern when I thought I saw Eric sad and alone on the playground, so I wanted to let you all know, he was fine. Thanks for all your comments and support.
Take care,
Niki
Thursday, August 17, 2000 at 03:23 PM (CDT)
Hello all~
We have lots of good news to report this week.
First, we sold our home here already!! On the second day on the market, we got an offer (above asking price!!---they REALLY wanted it!) for our home, so it is now under contract. The inspection and well and septic have been done and went well. Tomorrow the appraiser comes out. If all goes well, we will close on this house on the 27th of Sept (one day before our new home in Omaha!). Everything is really falling into place with this move so far........Phew! Thank goodness! We have the movers set to come the 25th of Sept to pack, load and then move our things on the 28th. We will head out on the 29th and to make it easier on the kids, drive it in two days again. I hope I'm not jinxing anything by sharing this news yet, but I am hopeful that this is all going to go through just fine.
** special note**
This will be our first move since purchasing our computer....any of you have any special advice of what to do/what not to do in terms of moving our computer?I'm definitely planning on taking it myself and not sending it with the movers! I am not very savvy on this subject, and I'm sure there's not much more to it than disconnecting, packing it, moving it, and plugging everything back in...........I will take the time to read my users manuel, but thought I'd ask advice from anyone out there who has information to offer on the subject...........I feel kind of stupid asking this though..........
Brian saw the oncologist this week, and everything looks good. His counts are great (platelets hit another all time high of 502,000!--One year and counting since last infusion!! YIPEEE!)
(I apologize to some of you on the PED-ONC list whose children are struggling with their platelets right now.............my excitement is not meant to make any of you feel bad in any way.......it's just that we were in your shoes before...........Brians platelets were "in the basement" for 3 YEARS, and he got infusions at least weekly for 3yrs, so this past year with rising counts and no infusions IS REALLY A BIG DEAL for us! I hope you can understand.......)
The oncologist and his staff have mixed emotions about our leaving........on one hand, they are so excited for Brian to be off oxygen and his chance at a better quality of life; on the other hand, they are sad to see him go.........they've had him in "their family" almost as long as he's been in ours..........he was seven days old when they first saw him, and they have followed him closely ever since.........they have seen him grow and change, struggle with life, and overcome insurmountable odds........he is, so far (fingers crossed!!), one of their miracles, and I'm sure they would like to continue following him and seeing him progress right here! But you can bet, I will keep them very much up to date on where he is and how he is doing......... and visit whenever we come back to town on vacation! But pictures and letters just aren't the same! When I think of the final good-byes to them and so many others, my throat closes up and my eyes fill with tears..........the emotions of going through something like this, and the ties that bind you to certain people who have "gone through it with you" and who have supported you, are absolutely impossible to express or explain..........I need to wipe my eyes now just to continue typing because just thinking about all this brings it all up to the surface..........just how far we've come, and how far we hope to continue going.........whew!!! Sorry..........
Anyway, Brian is scheduled for probably one last GI scope before we move, next Wed the 23rd. The GI doc will try to open the esophogus once more and then will "pass the baton" on to the GI docs in Omaha to continue working on this problem. As before, it is an out pt procedure and takes an hour or less, and then he will be home..........just in time for his 4TH BIRTHDAY!!!!! on the 24th of August! WOW!! 4 years.............4 years of struggling, but also 4 years of surviving!!!! That's the best part!
Well, Eric started kindergarten on Tuesday......he was soooo excited! He couldn't wait to wear his new backpack ("like the big kids wear!"), ride the bus and eat a hot lunch in the cafeteria! He was so excited, that when the bus came, he got on without saying good bye or giving me a hug or a kiss!!........he did stop to turn around though so I could take his picture getting on the bus!! As the bus pulled away and drove out of sight, I had to put my hand to my heart and try to hold in all the emotion that was bursting out..........didn't do very well........my neighbor, (whos son starts 2nd grade this year and has done this routine for two yrs already) turned to talk to me, and when I looked at her, I just started crying!!!! I didn't know I was going to do that or feel that way....I've heard so many people say that they did just that, and even though I thought I understood why, I really didn't understand quite well enough til I went through it myself............that first day, all day, I looked at the clock to see what time it was, and checked to see if it was time to meet his bus home.........I couldn't wait to see him and talk to him about his BIG first day!! I made cookies for him to have when he got home, and picked up a special gift for him to have that would represent to him in years to come, his first day of school.......also to show him how proud I was of him!! He had a great day, and he just looked like he had grown and matured so much in just that one day.........yesterday seemed fine too and Jeff went up to have lunch with him, but today, I need to see how he is really doing..........as I was headed into town, I had to drive right by his school, and as I did, I saw that they were out at recess, so I drove into the parking lot and stopped and watched from afar to see if I could spot him........when I did, he was standing all by himself just looking around while all the kids were running and playing around him........I watched and waited, and finally saw him wipe his eyes and face, as if he were wiping away tears..........my heart was in my throat and I wanted to run out there and see if he was ok and tell him everything was going to be ok..........but then the teacher blew the whistle for them to line up and come in, and he ran up to get in line and went inside.........I hope I was wrong about what I saw, because it's kind of unlike him, but this is all so new.....plus the stress and possible fears of moving, that I want to make sure he is ok and feels as secure as he can right now. So, now I am anxious to meet him at the bus today to make sure he is ok.........ugh......so many emotions lately...........a roller coaster of a different kind than the one we've been on in the past with Brian.........
sorry to ramble on so long. Thanks so much, again, for listening and responding and supporting.........You all are great!!
Take care til next time!
Niki
Friday, August 11, 2000 at 10:03 PM (CDT)
Hello again everyone,
Hope all is well with you all. Time to update again.....actually, I'm a little behind. We've been pretty busy here lately.
First, we had a great visit with Brians donor Mark, and his wife Gina and her sister Renee. They stayed for several hours and a pizza dinner before they had to hit the road again. It was our first meeting with Gina, and she is a very sweet, lovely girl.........Mark found a great partner in her. Now that we will be living inOmaha, and they will be back in Milwaukee, we will only be about 8 hrs away from them, and plan to try to see each other as often as we can. That will be great. Brian seems very comfortable with Mark, even after months of not seeing him. There must be something to that blood bond they have!!
I had the opportunity to meet up with one of my online pals from one of the cancer support groups that I belong to, this past weekend. She was coming through our area and I had her come by and stay the night with us. She dropped her boys off at their uncles in Denver, and she came up with her daughter who is 4. Sarah and Eric got along great and it was great to connect in person with someone that you've already connected with online. What a special bond we share; one that has only deepened by meeting in person. Our 28 hrs or so of time spent together is time I will forever treasure. Thanks Tammy!
Brian had his GI scope last Wed. and did very well. The last dilatation, the doc was able to "stretch" him out to 15cm. This time, he couldn't even get the scope through the scar tissue at the stricture, and the scope is about 9-9.5 cm. He was able to dilate him to about 12 cm this time but was getting a lot of irritation and bleeding, so he stopped there. The biopsies of the esophogus still show no signs of GVHd, but only esophogitis and reflux. They also keep noting every time they do biopsies, evidence of cells that are only present in the stomach...........and are being found in the esophogus. This is baffling to them and they are looking further into this and what it means and how this is happening. I'm not sure, but I guess even though he has reflux, these cells shouldn't be found up in the esophogus??? I'll have to wait and see what they say about that. He will probably be scheduled at least one more time to open the stricture before we leave, and then have Nebraska take over from there. It's sort of frustrating because it seems that the stricture comes from reflux and that causes the scar tissue. The scar tissue will continue to form there until the reflux stops. But meds alone don't seem to be stopping the reflux, and perhaps the Nissan fundoplication (the procedure done to 'tighten' the opening between the esophogus and stomach) is loosening up enough to allow the reflux to back up into the esophogus more. We may need to have him go back in to have that tightened again, but they will probably want to do an UGI or barium swallow to see how much is really getting through and backing up. HA!! Good luck getting Brian to SWALLOW ANYTHING by mouth!!! I suppose we could do it through his g-tube and see if THAT backs up..........technically, it should, since that is how he gets EVERYTHING. We'll see.
Well, we found and bought a house in Omaha already. I didn't have to fly out there to see any houses after Jeffs trip out there last wkd. He saw everything that was available, and videotaped a couple that were adequate possibilities.........but, there was a house we both saw when we were there that just was the best choice overall after we had the others to compare it to. We made an offer and they accepted and now we are going through all the paperwork to get that settled. We close on the 28th of Sept on that one. Our house here officially went on the market today, and we already had several showings. I have a feeling that this weekend is going to be busy. Hopefully, we can sell quickly so that our lives won't have to be so complicated in order to keep the house in showing condition as well as the hassle of getting together all of Brians medical paraphanalia to get out of the house..........its possible to do, but not easy. I have a feeling we will do ok. We have the BEST realtor and his team working very hard for us. They're really a great bunch of people and really get results. Wish us luck though, anyway!
I had to go and do the final registration for Erics kindergarten Wed., so he is all set to start school next Tuesday. I met his teacher, and saw his room and I think he is going to really love it there! They have a back to school night/open house on Monday so he will be able to go and see it all before he starts too. So, Tues at 8:29am, he gets on that school bus and drives away from me to go out into the big world! It's not like he hasn't gone to preschool or anything, but I always took him there........now, SOMEONE else is responsible for my kid, and there is a loss of control in that!! Aaaaaahhhhhhhhhh!!!!
I guess that catches us up for now. Eric and I did manage to get away on Monday to see the Pokemon movie and have dinner. I think it was good for both of us, since Jeff and I have been in "house preparedness mode" for the past two weeks. At least THAT stress is over. Not that there aren't a lot more stresses to come, but one at a time, we will get through this!
Thanks for listening! Take care.
Niki
Saturday, July 29, 2000 at 11:23 PM (CDT)
Hello everyone,
Well, we are home in Colorado again. We got home Tuesday afternoon, and have been "running" ever since. Our trip went well, and brought us to a big decision. Should we move or not?? Well, five hours outside Colorado sort of answered that question for us. We stopped the first day on our way to Omaha (to break up the 9 1/2 hr trip to make it easier on the kids) and took Brian off his oxygen to see how he would do.........and he was satting 95-98%. (I know I wrote about this while we were gone, so this is just a brief repeat) He stayed off the oxygen the entire time we were gone, and boy was it nice!! It was so liberating for ALL of us!! The nicest thing was to just "go" whenever and wherever we wanted without lugging around the portable tank, tubing and worrying about whether he was going to trip over the tubing or get tangled in it. Eric and Brian played together every day like regular brothers should, just chasing each other around the Ronald McDonald House. They both loved it and spent alot of time giggling and laughing at something so simple. Playing outside was so much easier too.
So, it was pretty much decided then, that we would move. It is difficult to leave a place that we love so much (and that I grew up in), but for the sake of Brians health and development, it's the best thing to do. I came to this realization on our trip back home. As soon as I had to put the tender grips back on his cheeks, and the cannula in his nose, I felt somewhat "imprisoned" again. It was then that it hit me that this was the right thing to do........for ALL of us. A peace came over me, and now instead of the "dragging of the feet" I was doing before we left for our trip, I am very anxious to get moved and get back to that freedom we all had in Omaha without Brians oxygen.
Jeff had five job interviews while we were there, and he got five job offers!! The job he wanted the most, is the one he took. It is at the University of Nebraska Medical Center, the same place Brian had his transplants, and I think he is very happy with the setup, type of work, salary and benefits. He starts work on Sept 18th. I don't know yet if we will all be there then. That just depends on real estate......buying a house there, and selling our house here (anybody looking for a nice place on 4 wooded acres in a mountain suburb just west of Denver?? where the foxes, deer, black bears, raccoons, mountain lions and elk roam?? hee hee). We looked around all the areas of Omaha while we were there to see what areas we liked best, and saw a few houses. Jeff is driving back this coming Fri to really look SERIOUSLY, narrow down the choices to the best of what we want, drive home Mon, and then I will fly out for the day on Tues to see the finalists so we can make a better decision together. We meet with our realtor here this coming Monday afternoon to start the whole process of putting our house on the market to sell here. We have spent the last two days really working on some of the things around the house here that will help to make it more marketable........nothing too major, just cleaning and sorting out stuff that just takes up space, and that we really don't need anyway.
After our return home, Jeff had surgery on his sinuses. He did ok, and hopefully this will help make the years of sinus infections a thing of the past. It's kind of strange cuz the sound of his voice has
changed.........something about opening up the sinus passages and letting more air through maybe??? He did admit that it is definitely different being on the receiving end of anesthesia instead of on the "giving" end of it!! Maybe it will help him understand even better what it is he does to other people when he puts THEM to sleep! I know he is very compassionate and very good at what he does, but there's nothing like knowing first hand what it's like to go through that.
Brians visit with the transplant team (as I wrote previously) went well, and the DNA fingerprinting came back after we got home. He STILL HAS ALL DONOR CELLS!!!!!!!!! It has been over a year, and I think that is soooooooo incredible!! When we were in for his check up, we had asked about the possibility of beginning a wean of his GVHd drugs to check the status of his GVHd----whether it was still there and just being held back by the drugs, or whether it is finally "going away", and they told us that they wanted to wait at least another 6 mos. Well, after thinking about it some more, they told us that since he was doing so well, maybe they would start a small wean. They want to wait til we get there though rather than trying to manage the changes long distance or while we were in the middle of a move. This is pretty exciting!! It will at least tell us whether the GVHd is gone for good or not. And if it is, then we can wean some of the other drugs he is on as well. This would be great, but, we will just have to see how it goes once we get there.
Speaking of "all donor cells"........Brians donor Mark, is coming for another visit on Tues the 1st. He is being transferred back to Wisconsin and will be driving through here on his way home, so he and his new wife (and her sister) will be stopping here for a few hours to visit!! This will be our third visit with him, and we are looking forward to seeing him again! He will get to see some more major changes in Brian since his last visit in February. It should be fun. Brian is really making some big changes in his development that is noticeable even to us! He is counting and saying some of his letters (although, not completely clear to the ear of a stranger!--much like a normal two year old who is beginning to talk-----except that Brian is about to be 4 in August!). He has been so much fun, and is pretty much a goof most of the time!
Eric is doing well, and seems both excited about the move, and sad about leaving. The school issue will be difficult and he will probably have to go to two separate schools. He starts kindergarten here on August 15th (Just TWO weeks away!!--yikes!), and then will have to switch to a new school in Omaha once we move. If there were a way to avoid that easily, we would do it, but, I'm sure he will do ok. It's more an issue with ME!! I just feel like this is his first "real experience" into the REAL world, and I wish it could be smoother!! But, I know at his age, it's much better to have this happen now, rather than in later grades. It's just that he'll have to leave kids and friends he knows and has known for the past three years in preschool, and start somewhere that he knows NO ONE!! Anybody else do something like that with their kids that can offer any words of advice or encouragement?? Like I said before, it's probably more MY anxiety than his. I know in the long run though, he will be fine.
We take Brian in to the pediatrician on Tuesday for followup, and then he goes in Wed for the next scope and dilatation to try to open up and stretch the stricture in his esophogus again. I'm not sure how many more times we will have to do this or if we will be able to have them all done here, but we are quite comfortable with the GI docs in Omaha as well. They have had almost as much dealing with Brian as our GI doc here.
So, I think that pretty much catches us up for now. I hope this finds you all enjoying your summer and doing well, and I appreciate all the notes I received from many of you while we were away. Until next time, take care.
Niki
Wednesday, July 26, 2000 at 11:58 AM (CDT)
originally posted on 7/20/00
Hi everyone,
Just taking advantage of the kids naptime to write a quick update.
Brian saw the transplant team on Tuesday, and basically everything looks
good. His counts are fine, and the DNA fingerprinting won't be back til...I
don't know; it's usually at least 5 days, so we might not hear on that til
we get home. We discussed whether to start weaning the GVH drugs to see if
Brians GVHd is gone or better, but the onc. doesn't want to do that for at
least another 6 mos! He felt that the GVHd was so severe in Feb when we
changed his treatment, that it's not likely to be well enough to start
weaning yet. So, since there will be no change in that part of his meds,
then we cannot take him off some of his other meds yet either. But, he looks
good and is doing reasonably well, so, we'll hang in there with what we are
doing now.
Brian continues to be off oxygen here in the "flatlands" of Nebraska....even
at night! Jeff has had four of his five interviews and we have driven around
the different areas here to familiarize ourselves with where we might
consider living if we do decide to move here. The decision is not final yet,
but looking more and more likely that it will happen. Once we leave here on
Monday, we will have to sit down at home and do some financial figuring and
figuring the logistics of a move if it does indeed happen. It's already
keeping us up at night while we are here....so many thoughts, so many things
to work out.......it's a little stressful.
All in all, our trip here has been fine. The first few days were extremely
hot and humid, but it has actually cooled off a bit lately and been pretty
reasonable. Jeff and Eric went to the Triple A baseball game on Monday, and
Eric and I are going again tonight with the transplant co-ordinator and her
family. We've seen and visited with a few of Brians nurses from the
transplant unit (who are now friends or extended family), and hope to catch
up with a few more before we go.
I don't know if I've left anything out, but will probably not update again
til after we return home. Hope all is well with you all, and that your
summer is going well too.
Take care. Thanks to those of you who have been keeping in touch while we've
been away.
All the best,
Niki
Wednesday, July 26, 2000 at 11:52 AM (CDT)
(originally posted July 13, 2000)
Hello from Omaha!!
Well, we made it. We drove it in two days......5 hrs yesterday and 4 today.
It was just right considering we had both kids, along with Brians feeds,
diaper changes, etc, and he did great.
The good news for him, was that we tested him off oxygen the first stop in
Cozad, Nebraska.....5 hrs from home......and he was satting 96-98% on room
air!! After he went to bed though, he dropped to about 88-91% so we put him
back on O2 to sleep through the night. Today, after we arrived in Omaha, we
checked him again, and he is satting 95% and above on room air. He has just
gone to bed, so not sure if it will drop after he sleeps or not; will let
you know. But O2 at night only is a HUGE improvement over all day/24hrs a
day!! I can't tell you the freedom already not having to lug around a
portable tank!!
The bad news, is that already, not even one day here, it's looking a lot
more like we will be moving here to free Brian from that one "chain". We've
got two weeks here, so we'll see how it goes the whole time. It's definitely
HOT AND HUMID enough here.....ugh!! Not my favorite weather! Thank goodness
for air conditioning!!
We are back at Ronald McDonald House here in Omaha (for those of you here in
Omaha, if you are trying to reach us, we are in room 4, ext 21) and we are
back in the same room we had last summer. The only difference is that Brian
is WITH US this time, instead of in the transplant unit!! Yea!!
Brian has an appt at the cancer clinic on Tues the 18th to follow up with
the transplant team. Whatever there is to report, I will do after that
visit. He went to the onc at home on Tues before we left, and all was well.
His platelets have hit an all new record of 492,000!! and other counts are
fine. His cyclosporine level was way out of whack--I think due to my mistake
in drawing it, and we will check it here tomorrow before giving him anymore.
His visit at the genetecist was long and disastrous on Monday, but I will
save that for another time, when and if I get more information on what they
were discussing with us. They are checking some more genetic studies and DNA
studies on him--they took a skin sample from him and some blood from both
Jeff and I to compare to. The results of this study will not be back for at
least 3 wks. If the results are positive for the genetic disorder they are
looking for, I will tell you all about it then.
I'm pretty pooped tonight, and will cut this short for now, but hope this
finds you all doing well. Thanks for all your notes so far. RMH now has a
computer in the house (which wasn't here last time), so I don't have to go
far to log on now. I'll check in as much as I can.
Take care.
All the best,
Niki
Sat Jul 8 21:26:48 CST 2000
Hello everyone!!
Hope your 4th holiday was nice (for those in the US!).
Jeff was off for once and we had a little cookout here.
The last time I wrote, Eric was the one who was sick, and he continued with high fevers (up to 103 for 4 days) and a horribly sore throat for a week. His appetite was gone and it was hard to even swallow had he been hungry, but he's back to his old self now and feeling better. We even went to the new Rocky and Bullwinkle movie yesterday just to get out after being so cooped up. Pretty silly and kinda cute.
My mom was here visiting and left on Thurs. It was good to have her here and I think both she and the boys really enjoyed their time together. It's had to have that quality time when she and my dad are so far away. I'm hoping they can figure out ways to come up more often, since it's near impossible to get to them while Brian is still undergoing so much care.
Brian is doing well. He saw the urologist Monday who said all looks good from the testicular surgery a month ago. The testicles are now where they should be and still alive, so that's good. He wants to check him again in about 6 mos.
We take him to see the geneticist Monday for a long evaluation, and then the oncologist on Tuesday for his monthly checkup and labs. We leave for our trip to Omaha on Wed to test Brians lungs at the lower altitude, and to get an unofficial 1yr post transplant check up. We think (and hope) we will be staying at the RMH there, so those of you in Omaha now, we hope to connect with you all while we are there. If it is full, I will let you know by e-mail where we will be staying after we get there.
Not much else going on with Brian except we are in the process of switching Brians feeds from pediatric vivonex to pediasure with fiber. We have him at 3/4 strength pediasure, and so far it's going ok. We will try to get to 100% pediasure before we continue going up on volume.
I will try to write once more before we leave if I can about the genetics consult and onc visit. Otherwise, I'll just have to catch up when we get settled in Omaha.
Take care everyone.
All the best,
Niki
Oops! btw, there is a new photo of Brian loaded onto his web page that I forgot to mention. It's after we cut his hair again (more like shaved it!) where he is playing in the sandbox outside. He loves it out there now that he is used to the way the sand feels!
Thursday, June 29, 2000 at 11:00 PM (CDT)
Hello friends and family,
I hope this finds you all well.
Brian had his surgery/scope yesterday, and did well. It was less than an hour, and the GI doc used the balloon to "stretch" the stricture open again. He also injected steroids into the lesions/scar tissue that was formed there causing the stricture. Hopefully this will help break it down and keep it more open longer. He wanted to do this again in 2-3 wks, but since we will not be here, we will have to wait a month. We will probably do the PH test that tests for reflux at that time. We couldn't do it this time because he hadn't been off the antacid for the required 24-48 hrs first. The doc said that from what he could see, the area just below the esophogus as it enters into the stomach may look a little less raw and inflamed, so perhaps the carafate and zantac are helping somewhat.
Today Brian was back to his old self again, and actually driving me a little crazy!! hee hee That's ok though. Better than being sick or in the hospital, right? He went to the pediatrician and since we are now up to 100 cc/hr five times a day on his feeds (up from 80-85 cc when I wrote 2 wks or so ago), we will decrease the TPN (IV nutrition) down to 400 cc overnight now. We're getting there.....slowly, but surely.....getting closer to being off IV nutrition altogether. We may go ahead and try to switch his elemental formula over to pediasure with fiber now instead of waiting til we get to the top rate of 150 cc/hr 6 times a day. It has more calories and would allow us to give less volume while getting the same or better nutritional value. We'll see. Brian sees the urologist next Mon for a follow up to the surgery we did a month ago. The following Monday he sees the genetecist, followed by the oncologist on Tues.
Just as we are getting Brian better, now Eric is sick. Not sure what's going on, but he came home this afternoon from school with a 103 temp and sore throat. No redness, just red dots on his tongue. Temp keeps going up and down. I'm giving him tylenol and motrin and hoping he feels better in the morning. If not, I guess we'll turn around and go back to the pediatrician tomorrow, but for Eric this time instead of Brian. Poor kid. I hope he's ok. We just watched movies tonight, and took it easy. He got a bath and I think that helped too.
Well, I'd better go try and get some sleep in case it's a long night with Eric. It's always sort of odd for me when my "healthy" kid is sick.........makes me have to think, unlike with Brian, where I am always on the lookout for so many things that are normal for him.
Oh well. A parents job is never done, is it?? hee hee
Take care all.
Niki
Tuesday, June 27, 2000 at 09:36 PM (CDT)
Hi everyone,
Just a quick note for now.
Tomorrow Brian is having the second "balloon" procedure to open the esophogeal stricture some more. This will be done under anesthesia again, and I imagine they will do a quick "look-see" with the scope afterwards to see how his esophogitis and reflux look since the last scope a month ago, and since he began new meds to treat this. We see the GI doc at 11:30, and then have the procedure done at a day surg clinic at 2pm. Home after recovery. Let's hope he doesn't get into trouble like the last time we did all this!!
He sees the pediatrician on Thursday for followup, and then after that, I guess I'll update on how things went with his scope, so I'll have everything to report.
Briefly, Jeff and I DID get out for our 15th anniversary (yea!!!) and had a very nice, fancy dinner! We took our time and really enjoyed it. It was nice to not have to get up even once during dinner to do anything for anyone else! And to have my meal hot when it's supposed to be--hee hee!!
This past weekend, we also had an opportunity for all four of us to go to a family reunion where we got to see all of my cousins, aunts, uncles, and my mom even flew up for the occasion. We were missing my dad and my brother, (boo hoo!) but everyone else made it! I think it was a great chance for some of them to see Brian now that he is doing so much better. I really enjoyed it and wish we could have stayed longer to really catch up more. Oh well.......it was still nice.......never really enough time is there??
The fires are finally out now, and we have finally gotten some much needed moisture........now there is actually concern about flooding in the fire area near us.......can you believe it?? they go from one disaster to another, possibly. I hope they are spared this one.
Well, that's it for now. Hope all is well with you all. I'll be in touch as soon as I know the results of Brians procedure tomorrow and whatever the pediatrician has to say.
Take care.
Niki
Thursday, June 15, 2000 at 10:37 PM (CDT)
Hi everyone,
As some of you on my mailing list already know (because some of you live here), we are dealing with wildfires in two areas of Colorado right now. One is near my childhood hometown of Loveland and the other is near where we live now, in the mountains west of Denver. It's pretty bad and very scary, and the winds today did not make things any better. The Hi Meadow fire near us is between 12-15 miles from where we are now. The winds today made it very unpredictable, but we're hearing that rain is on the way poss tonight or tomorrow......let's hope anyway!! I've had several people calling and e-mailing us to find out what's going on, and since it's difficult to correspond to everyone, I'm going to give you a website for one of our local newscasts where you can find out more closely what's going on.
www.9news.com Hope this will help.
Brian came home from the hospital on Saturday, and is doing very well.........like nothing ever happened that little goof!! Diarrhea is gone, and he's back to walking and getting into things again..........Yea!! Not sure the exact cause of diarrhea which led to the dehydration, which sometimes is frustrating......cuz then you don't know what to avoid in the future. His onc visit Tues went well. His platelets are up to a new high for him......426,000!! all other counts were ok too. The pediatrician called and checked in and said that since we have continued to go up on Brians feeds (now at 85cc/hr, about to go up to 90) he ordered the TPN down to 500cc overnight. Moving slowly in the right direction.........the volume may be getting to be too much on the feeds to handle over 5 feeds a day, so we may have to go to spreading it all out over 6 feeds pretty soon.
I guess that catches us up for now. Next week Jeff and I celebrate our 15th wedding anniversary, and although we are not in a position to really get out and celebrate like we would like, we are planning at least a few hours away for dinner and or a movie while a friend comes up to watch the boys. It's been forever since we've been out alone together. The last attempt was supposed to be lunch on my birthday back in March, but as you know, we had to cancel that when Brians central line had to be replaced. Oh well......it's always something.....hopefully this time we'll make it without anything cancelling our night. It's not much, but I'll take it!
Hope all is well with you all. Have a good weekend.
Niki
Sunday, June 11, 2000 at 09:06 PM (CDT)
Hi everyone,
Today is an anniversary of sorts. One year ago today, Brian had his second transplant----DLI (donor leukocyte infusion of stem cells from the donor who donated marrow the first time--Thanks Mark!). It's hard to believe, actually. It feels so much longer than one year. Glad to have him here though, even though the road has been rough sometimes along the way.
Well, he came home yesterday from the hospital. Stools seem back to normal, or close, and feeds are back to where we were before all this began. The cause of all of the diarrhea is an unknown........everyone says something different. One says GVH (even though the bx from 1 wk ago was neg, and all his lab values that would point to that are normal or not indicative of that). Another says unidentified GI virus/bug. I kinda think it might have been one of the new drugs that he started last Fri after surgery--just 1 1/2 days before the diarrhea started....conincidental?? It can cause diarrhea, but is not typical. We stopped it, and switched him back to zantac. When things are completely "normal" again, we will try the Prevacid again (because it's more effective than the zantac) and if the diarrhea starts up again, we will know for sure that it was the culprit and switch back.
The last day and a half at the hospital, Brian was definitely feeling better and more himself......started walking around the room and showing off to the staff how far he has come!! There were a few who were there when he was unhappy, uncomfortable and crying and inconsolable and they were so pleased to see him more like himself. The hospital is on divert again, so we'd better not need them again anytime soon!! I don't want to go to another hospital again!!
Well, it was a long week. Felt like two! Next week is his monthly (hard to believe we're doing monthly checkups instead of weekly) checkup at the oncs office. They checked Brians cyclosporine level in the hospital and it was a little high, so they lowered his dose, and we will re-check it on Tues at the oncs office. I guess we need to reschedule the next balloon procedure with the GI doc for about 3 wks, to "stretch" out or dilate Brians esophogus again so the opening will not be so small. We don't know yet how many times this will need to be done; it just depends on how much the last dilatation kept it open. It needs to be opened a couple more cm?? I think before it is at a safe size for passing food through. Important for down the road when we try to start feeding clinic. Right now, we continue on with the plans to increase his formula feeds and decrease the TPN. I hope to get there soon without any more setbacks. That sure would be nice.
Thank you so much to all of you who sent notes of support to me/us. I'm sorry I couldn't get back to you all personally, but I just couldn't keep up. I barely had time to read. I hope all is going well with you all and I will write next week after the onc visit. Take care.
Niki
Wednesday, June 07, 2000 at 10:18 PM (CDT)
Hi all,
Phew!! I'm exhausted. I don't feel like I have that much to report. Most of the cultures that we've been waiting for have come back negative.........that's good, but it doesn't explain why he got this diarrhea in the first place. The thing is, we may not ever know for sure what caused it. The GI checked into one of the drugs that we started on Fri after the scope (prevacid--like Zantac), and he found that it can cause diarrhea, so we are stopping that and going back to Zantac for now; IV while he's in pt, and PO (by mouth) when we get home. They did not start up feeds today as planned, because he still had just enough diarrhea that they wanted to give his gut a little more rest before adding something to it. Especially since it just might make things worse before they get better. So, hopefully tomorrow, if the stooling continues to decrease, we can start slowly tomorrow. They definitely want to keep him for 24 hrs after he starts his feeds again, to be there to avoid dehydration again if he starts up with the diarrhea after feeding. So, we're looking at another two days in pt at least. Fri at the earliest, but more likely Sat. (of course, that's all negotiable yet, depending on what comes of the next few days)
By the time I got out of there today at 6pm, Brian was beginning to seem more like himself. He was at least sitting up, and playing with some of his toys again, reading books, and interacting more. That was good to see. I guess if he pulls himself up on the crib and starts walking around the inside of the crib soon, we'll know he's ready and well enough to get going!! It's been kind of nice for the staff to see this part of him emerging, since they haven't seen all the progress in his development in awhile. They're amazed at his ability to sign and his level of understanding questions asked of him, as well as the skills he has with some of his learning toys. If he does become even more himself, and feels like walking again, they will REALLY be amazed!! They've never seen that with him!! Remember.........he was born at this hospital and has been being treated there since then (the past almost 4 yrs), so they have seen him grow and change as much as we have!!
We passed an anniversary yesterday..........exactly 3 yrs since Transplant number 1...........6-6-97. Wow!! Hard to believe how far we've come!! Glad we're (he's) still here!!
Well, I'm off for now. I'm sure I've forgotten something, but I'm so tired, and my eyes so dry, that I can hardly see the screen and can hardly think!! I'll update when I have more info. Thanks to everyone who has written for all your support. I deeply appreciate it!!
Take care.
Niki
Monday, June 05, 2000 at 10:47 PM (CDT)
Hi again everyone.
I got Brian down to the hospital and they started running (more like pouring) fluids into him to try to get him "caught up" on all he had lost in the last 36+ hours. They are doing stool studies/cultures and labs. WBC was 22.5, plts were fine, most of the electrolytes were ok (surprisingly), except for the BUN. They have found some white cells in the stool so there must be some kind of infectious process going on there, but not sure what yet. I was with him all day and it was actually pretty rough as he was soooooo thirsty and was crying for almost 3 hrs for something to drink, but they wanted to rest his gut and didn't want him to have anything by mouth. It makes sense, of course, but try telling that to Brian!! Here we've been working so hard to get him to start taking something by mouth, and he's BEGGING for it (granted, he's dehydrated), and now we can't give it to him! They finally agreed for his happiness to let him have 30cc every hour (whoopee!!) Try making an ounce last for an hour!! Eventually the fluids they were pumping in to him must have made a little bit of a difference cuz he finally settled down and stopped crying and stopped begging for more water (pedialyte). Just in time for Dad to relieve me for the evening. After I got home, Jeff called to let me know that they were transferring Brian to his "home" hospital (into the PICU possibly) to moniter his condition more closely and have easier access to his whole team of specialists. I kept getting conflicting reports as to exactly what was going to happen, but as of this writing, he was being sent by ambulance to his regular hospital. This place we went first was ok and they were very nice, and so was the hospital, but they don't have intensive care backup for peds if it is needed and they were feeling like Brian was on the borderline of trouble. I don't know how they found a bed or if one opened up at his regular hospital since this morning, but it will be nice to have him where we know everyone and they know him/us, as well as having the PICU option should he need it. I'm rambling, sorry. I'm exhausted. Little sleep last night, and long day today. And I've got to be out the door in the am at 5am to get to the hospital to relieve Jeff so he can get to work (that's an obscene time for me!!) Erics spending the night at a school friends so they can just go to school together in the am (Thanks again B&T!)
and we'll figure out tomorrows plan tomorrow!! I hate when this stuff happens. It's hard enough for us to have to get ourselves organized to make things work, but it feels awful to have to involve and take advantage of our friends and neighbors in this whole drama!
I'll update again when I know more. Thanks to everyone who left me messages and support. Sorry I can't post personally to you this time, but I just don't have time right now. Take care. Talk to you tomorrow.
Niki
Monday, June 05, 2000 at 10:40 PM (CDT)
Hi.
Just a quick note......not good news. Long story short, Brian has had diarrhea for two days and is now dehydrated. On our way to the hospital........not our usual hosp either...they are on divert and cannot take anyone!!! Don't know this other hosp at all, so don't know if I will have computer access from there, but will update as soon as I can.
Niki
Friday, June 02, 2000 at 09:28 PM (CDT)
Well, hello everyone,
It's strange to not have written for two weeks, but since our doc visits are farther apart now, there's less to report.
Today was the day Brian had his multiple surgeries. It was all done in day surgery and he is home now, but pretty knocked out. The urologist did the second stage of the testicular surgery to bring the testicles down from the abdomen into the sac. It was more difficult than usual due to the cushingoid/steroid fat Brian has from past steroids, but he was able to get it done. There are several insicions, but they look ok. He is VERY sore though, and on pain meds every 4 hours for the next 48 hrs. Tomorrow will be interesting to see how he feels and if he is as mobile as usual.
The GI doc tried to put the endoscope down through Brians esophogus, but the esophogus was stenosed pretty badly and was so small that the pediatric scope would not pass through. He came out to talk to us about what he would recommend before moving forward. He wanted to try and put a balloon in to dialate the area that was tightened up so small. We told him to go ahead. He did and was then able to pass the scope as far down as the duodonum to see everything he needed to see. There is severe esophogitis and reflux (assumed, but not actually confirmed). He took biopsies of several areas, and wants to repeat the scope and dilatation again in a month to try to open the esophogus more. He said if Brian were trying to eat right now, food would not be able to pass through the current opening, and that water is about the only thing that would fit through it now. One more reason not to start trying to feed him by mouth yet. This dilatation may have to be repeated a few times, but we won't know for sure until he goes back in the next time in a month. The Nissen wrap (that keeps him from vomiting) is a little bit loose, and may need to be re-wrapped at a later time. They did say that dialating the strictured area, may actually help Brian swallow his saliva better now..........perhaps that is why he has never been able to do so very well before now, and why he just lets it pool in him mouth before it finally drips out. We'll have to see. We are starting him on some new meds for the reflux and esophogitis--prevacid and carafate. Hopefully these will help coat the inflammed areas and cut down on acid production..I think, not sure yet exactly. Anyway, we are going to continue with increasing feeds.....we are up to 70cc/hr 5 times a day from the original 30cc/hr. The TPN (IV nutrition) has been cut again to 500 cc a day. His weight at the pediatricians office this week was down to 38 lbs, 10 oz (from his high of 43 lbs a few months ago). All else is going well. No labs til we see the onc in 2 wks...........I have to say, it was very strange not going to a doctors appt last week and not having labs this week. But, very freeing too.
Last time I wrote, we were about to go see Blues Clues Live with both Eric and Brian, and it was great!! Brian was initially frightened because of the dark, and loudness, but halfway through tolerated it better and seemed to enjoy it. It really was alot of fun--even for ME! It was very well done and worth every penny!! I think the outing was pretty exhausting for Brian though, because later that evening when he usually sits at the dining room table to get his last feed for the night and IV meds, he fell asleep at the table!! I got a photo and put it on his webpage if you'd like to see it. Eric also saw the new Dinosaur movie with Jeff and said it was very good. I haven't seen it yet.
Brian is walking 100% now, and has plenty of new bruises to show for it!! The most recent one came yesterday as he fell and hit his head on the corner of the kitchen doorway on his head....OUCH!! It's quite a knot! But, it doesn't stop him! He's working on learning stairs too.....doing pretty good going down, but not too sure about going up.....he does it on his tummy and does pretty good. I stay behind him though....he's still not good enough to go it alone!
I guess that's about it. We were following the Stanley Cup playoffs pretty close while the Colorado Avalanche were still in it, but they lost to the Dallas Stars in game 7. So, now, out of allegience to family that live in Dallas, we are pulling for the Stars..........Eric is really into this whole sports thing! He likes to follow certain teams and wants to know the scores, etc. It's really kinda funny his level of interest and knowledge.
So, I think that will catch us up for the next two weeks. Hope all is well with you all. Take care.
Niki
Thursday, May 18, 2000 at 03:18 PM (CDT)
Hello everyone,
I hope your Mothers day wkd was nice. Ours was. Jeffs schedule, somehow worked out to have a 3 day wkd. My day was nice and we had take out for dinner so I didn't have to cook!
The Mothers Day tea at Erics preschool was so sweet. They sang some songs to us, read us a story, gave us hand made potholders, and served us tea and sandwiches and cookies! I got teary-eyed a few times as they were singing their songs to us.
Anyway, about Brian. He had two appts this week--on Tues.
First was the urologist, who we haven't seen in three years. He said we could go ahead with the second stage of the surgery to bring his testicles down from his abdomen into the proper place. Because he is at high risk for later testicular cancer, it will now make it easier for his docs to check him for that in the future. While they are under anesthesia, they will also finally do his circumcision too (ouch!--because of low platelets and infection risk in the past, it has never been allowed). This procedure is scheduled for June 2 and will follow the endoscopy of his gut and esophogus by his GI doc. This should all be done as an outpatient, but they will set it up as a possible 23 hr observation just in case he needs to stay longer.
Brians saw the oncologist after the urologist and all went well there. His cyclosporine level was ok, as were most of his other labs. The GGT was down to 191. His platelets have broken another new record.....over 400,000!! They were 402,000. Never been there on their own before!! Whew-wee!! The onc felt it was ok to go ahead and cut back on office visits and see him every two weeks, alternating with the pediatrician every two weeks. Wow! What will I DO during those off weeks--hee hee!!?
The pediatrician cut back Brians TPN to 600 cc a day from the 800 cc we were at, which allows us to give it over less time now too. His feeds are up to 60cc/hr 5x a day now, on our way up to 150cc/hr 6x a day. He's tolerating them ok so far. One step closer to being off TPN altogether! And then we'll work on switching the IV cyclosporine to oral......unless by that time they feel he can discontinue it altogether.....I don't know. We haven't even talked about that yet, but will discuss that when the time comes. At the rate we are going up on feeds and down on TPN, it will still be another 2 mos. Close to his 4th birthday---perhaps that's what we will give him for his b-day.......one less hook up!! ha ha ha
Anyway, his walking continues to improve.....he's pretty much walking 95-100% of the time on his own. Still getting stuck when his O2 tubing has stretched it's 50 ft, but once he gets it unstuck, he's on the go again. He's had a few falls......one that left a bruise on his lower cheek, poor kid! He's now working on managing stairs......uh-oh!! Time to get out the baby gates! I got to thinking the other day how everything happens when it's supposed to. I used to feel so bad that he wasn't walking when he was "suppose to", but when I think about it, if he HAD been walking back then, with his inability to make and hold platelets, it could have been VERY dangerous for him, with all the falls that come with new mobility. So, I guess, it just wasn't suppose to happen til now when his platelets were fine.
After many inquiries and investigation, the insurance issue that came up a few weeks ago has been resolved. Jeff and Eric and I will be covered by Jeffs new health plan as of July 1st, and Brian will go to strictly medicaid. This will allow him to go to all the same providers, hospital, therapists, home health care and oxygen company and maintain the continuity of care he has received over the past 4 years. I hope we don't run into any unexpected problems, but feel like this should work out to be the best situation for him.
The weather here went from 89 degrees last week and cooled off to where we are now in the 30's and 40's and snow and rain. Tomorrow is supposed to be nice and sunny again. Typical Colorado weather. I don't mind the changes though.
Everything and everyone else is fine. I got another massage (this time therapeutic) at the Day spa yesterday, and it helped relieve some of the pain and strain in my back from lifting Brian all the time. Tomorrow Jeff is taking Eric and one of his friends to the new Disney movie, "Dinosaur". Saturday, I'm taking Eric and Brian (along with another of Erics friends and his mom) to see "Blues Clues Live". I'm hoping it will be fun for Brian, as it is his FIRST EVER event like this. He LOVES Blues Clues, and we have seats pretty close to the front, so I hope he will really enjoy it. Or I should say, I hope he enjoys it enough to stay seated in his stroller during the performance and not fuss to get out! I'll let you know how it goes.
Well, I guess thats it for this week. Since we do not see any docs for 2 wks, I will probably not update every week anymore unless I have news that can't wait. I may, however, just update Brians website in between if you want to check in there.
I hope you are all well. Take care.
Niki
Thursday, May 11, 2000 at 12:58 PM (CDT)
Hello again everyone,
It seems like I just wrote the last update, and now it's time again. Hope the past week has been good for you all. The weather here has been really nice but we did have snow one day and today is cool and foggy. Otherwise it's been 70's and 80's and makes me ready to get outside more.
Yesterday Brian had two appts. The first was with the endocrinologist. He said he thinks Brian is doing well. We had to check Brians glucose for about 10 days a few weeks ago with a glucometer at home and it was ok. However, he doesn't want to change Brians replacement dose of cortef right now. He said because it is such a low dose, it is ok, and until Brian is off some of the immunosuppressive drugs, and out of the woods more in regards to the many other problem areas, he doesn't want to try to wean him off the cortef to see if he is producing the cortisol on his own yet.
The pediatrician saw Brian after the endo. and said he thinks Brian is doing well overall too. Since the feeding increases have been going well, he is going to decrease the TPN now. We have gone up a total of 100 cc over the course of the day and he doesn't want him to get into trouble with fluid overload. We are up to 50cc/hr 5x a day now from the 30cc/hr where we began.
Brian is walking even more now, independantly, and as wonderful as this is, it has become a real problem with his safety and freedom to roam with the oxygen tubing. The moving issue has come up again, but we still have no hard fast rules or answers on what to do and/or when.
The GI doc is working on scheduling Brian for the endoscopy and GI bx around the first part of June. We are also taking Brian to followup with the urologist about finishing up the two stage procedure to bring his testicles down (he was born with bilateral undescended testicles and had the first stage surgery to bring them down from the abdomen to the pelvic area before transplant #1). If he is going to go ahead with the second stage of this procedure, we'd like it done at the same time as the endoscopy so we can take advantage of one anesthesia. We also have a new wrench to throw into the mix. Jeffs employer is dropping our insurance provider as a choice to the employees as of July 1st. They are doing a self insured policy now. The new policy lists all of Brians specialists on this plan, however, his hospital is not part of the covered plan. Neither are his three therapists, oxygen supply co, and home pharmaceutical provider. We are currently looking into the new health coverage to see if they would make an exception for Brian to keep the continuity of care, but the coverage manuel says "out of network" is NOT A COVERED EXPENSE. It's just a matter of finding the right person to talk to to see if they have special circumstances that says they WILL make an exception to this. If they do, I'm sure it is not an advertised fact in the manuel!! If we do find that they still will not cover Brian with the hospitalization, therapists, etc that he currently uses, then we may have to resort to changing his medicaid secondary as a medicaid only coverage. I just need to see if all the specialists would take him as "medicaid only". After almost 4 yrs of care with the same facilities & personnel, it is difficult to have to change what is comfortable for him as well as us. I hope that something will work out to maintain his continuity of care.
We see the urologist next Tues as well as the oncologist. The pediatrician and I discussed the possibility of cutting Brians visits back to once a month now instead of twice, as well as the oncologist. So, instead of seeing one of them EVERY week, we would go to one of them every two weeks. Since he is doing much better and is pretty stable, I think this would work. It would be nice to not have somewhere to have to go EVERY week too! I'll check with the onc next week to see if he agrees.
I think that's about it for this week. The rest of us are doing ok as well, and Erics preschool class is putting on a Mothers Day tea tomorrow afternoon that I will be going to for the first time (the past few yrs I have been unavailable due to Brians needs). I'm looking forward to it. One of his preschool friends will be coming for a sleepover Sat. night as well. It's going to be harder when Kindergarten starts for them, cuz they will go to separate schools then. We'll just have to work harder to get them together on the weekends or after school I guess. I would hate for him to lose that special bond with his friend that he has built up. I know he will meet new friends, but still, there's no need to lose the old friends.
Thanks to all of you who keep me updated on your lives and for those of you who sign Brians guestbook. I appreciate it and all of you. I hope this finds you all well and happy.
Have a good week/weekend. Take care til next time. Happy Mothers Day to all of you mothers too!!
All the best,
Niki
mother of Brian (3 3/4yrs) born with JCML; 1st BMT 6/97 at 9 mos old;
2nd BMT(stem cell actually) at 2 1/2 yrs old on 6/11/99; currently no evidence of leukemia cells
but recovering from transplant complications (GVHd) and developmental delays.
Also mother to Eric (5 1/4yrs) and wife of almost 15 yrs to Jeff. : )
Brians current website: www.pilink.com/co/brianspage
(which may or may not have been updated recently...sorry)
Sunday, May 07, 2000 at 04:00 PM (CDT)
Dear Friends and Family,
Phew!! What a busy week it was! We had 4 appts in 3 days and I am now pretty tired!
Tues was Brians gastric emptying study at the hospital. All went well. With him being older and more mobile, they now adjust that study to accomodate "mobile children"!! Insted of his having to hold still laying down for an hour during the scan, they just scan for 2 min at a time every 10-15 mins, so he only had to hold still for 2 min! They had a TV/VCR which helped ALOT, so he could watch a movie while he was being scanned!
The results showed that he still has delayed emptying.......61 mins to half empty, while 30-45 min is normal, but his last study took him 71 min to half empty, so he has gotten better. It does explain though why he still has some reflux.
Wed. Brian saw the oncologist first and all went well there; his labs are fine and liver functions continue to decrease but at a much slower rate. After the oncologist, we headed over to the pulmonologist. She was pleased to see that his oxygen need decreased from 2 liters to 1/2 liter since the last time she saw him, as well as the CXRs improvements. He still has cardiomegally (enlarged heart) due to pulmonary problems, but everything else has improved in his lungs since the last xray. We are only changing his breathing treatments slightly, and otherwise, no other changes in regards to his lungs. We will see her again in 3 months for followup.
Thursday, Brian had his modified barium swallow with the speech pathologist and that went pretty well too (well not for Brian--he didn't like it ONE bit-but they saw what they needed to see). Despite his fears and dislike for this procedure, he DID drink some barium and protected his airway, and managed it properly in his mouth and esophogus. He DID not do as well with the pudding (more solid like) in terms of swallowing that though, but they said considering the fact that he was upset and crying, his abilities to swallow properly and all were great, so if he was drinking or trying to eat when he was calm and happy, it should work just as well. This mostly tells them and us that we can safely proceed with trying to get him to drink and eat as tolerated without fear of him being physically or medically unable to. They reccomended adding a thickener to his water or juice as tolerated to give his mouth the different sensations and textures of different foods, drinks, etc. So, we will try that. We have increased his g-tube feeds 3 times since starting and are up to 45cc/hr 5 times a day (from 30cc/hr 5 times a day), and he's tolerating it so far. We are to continue going up 5cc at a time every 4-5 days as tolerated til we reach the max where he was before his second transplant of 150cc/hr 6 times a day and then we can try to switch the formula back to pediasure. If the thicker water and juices do well, and we get to that point with the feeds that we want to be, we may be able to get him to DRINK the pediasure and get off feeds altogether through the g-tube while we work on table foods. The TPN has not been decreased yet, but I assume it will be next week when we see the pediatrician. By that time, if all goes well, we should have increased his total daily intake of formula to 250 cc per day instead of the 150cc per day, so a decrease in TPN will be more necessary to keep him from getting fluid overloaded. As long as his lungs are so tenative, we will always have to be careful not to let him get too much fluid. The GI doc called about these results today and said that although he is not in a big rush to get an endoscopy done, he DOES want to see for himself how the esophogus looks and check the stomach and Nissen wrap. Between his full schedule now, and an upcoming vacation, he will schedule this for the end of May. That's ok with us, and it gives us more time to proceed with Brians feeds to see how the continued increase affects his reflux anyway. At least the stools are not getting worse with the increases..........in fact, they are actually getting a bit better! Unbelievable!!
I think the biggest news I have though this week (and I'm not sure when I'm supposed to say that this is official) is that Brian IS WALKING!!!!!!! I mean, I don't remember when we officially said Eric was walking......was it when he took his first few steps? or was it when he walked 50% of the time? Or was it when he walked 100% of the time?? Well, for Brian, we would say right now, it's about 60% walking without holding on to anything, and 40% holding something. Since we're talking about Brian, and how far he has come, I'd like to consider THAT walking!! It's really incredible how much more secure he is in it, and how he WILL now do it on demand, if you ask him to (when only a week or 10 days ago he WOULDN'T do it on command!). He is getting SOOOOO mobile, that his oxygen tubing is really becoming a hinderance. We have 50' of tubing that allows him to go everywhere in our house, but he doesn't walk with the tubing in mind........he just goes........sometimes in circles, or back and forth, and he either runs out of tubing or it gets caught on things, so it can be very limiting at times. We just don't know what to do about that. We have brought up the subject of moving again recently since it seems that a lower altitude might mean he wouldn't need the O2 and could get around without this limitation. It's a tough situation not knowing whether this should be done sooner than later, or whether his lungs could heal enough to be able to stay here without the O2. Nobody really has the answer to that. Only time will tell. All we know is that we will do what we have to for the sake of our childs well being and progress in development, even if it means leaving the home and community we love so much. This is just another sacrifice we have to consider for Brians sake.
I guess that's it for now....sorry it turned out to be so long. I enjoy getting all your notes and appreciate all of you who sign Brians guestbook too. I hope all is well with you all and that you are maybe getting to enjoy some nice spring/summer weather like we have been here this week (broke records today! Normal for this time of year is 67, and we hit 89!) It's been in the 80's all week actually. The next few days are supposed to be back down in the lower 70's, but that's ok too. It's been beautiful!
Take care.
Niki
Tuesday, May 02, 2000 at 08:56 AM (CDT)
Good Morning,
Just a brief note. Today Brian goes in for his gastric emptying study to check the speed at which his stomach empties and to see if it refluxes back up. Tomorrow he sees the oncologist and pulmonologist, and then Thurs he goes in for the swallow study. Busy week. But really BIG news is that he is WALKING!! He walks without help or holding onto things about 50% now!! It's so incredible!! Never thought it would happen, but it is......ever so slowly. Hooray!!
He is also tolerating his increase in feeds so far, but we've only increased twice going up from 30 cc/hr 5 times a day to 40 cc/hr 5 times a day. If this last increase is tolerated, then we will decrease his TPN a little bit.
That's it for now. Will update later in the week as I know more of the results from this weeks visits.
Take care.
Niki
Tuesday, April 25, 2000 at 10:51 PM (CDT)
Good evening everyone,
Brian saw the GI doc yesterday to evaluate how to progress with feeding issues. He is ordering a swallow study with a speech pathologist, and a gastric emptying study in Nuc. Med. He first wants to check the status of Brians previous history of reflux and slow gastric emptying. Depending on what the results show from these, he may then order an upper GI endoscopy with biopsy to actually "see" the esophogitis, ulcer and reflux and get a bx all under anesthesia. In the meantime, we are beginning very slowly to increase his g-tube feeds. For now, we will go up only 5cc/feed adding a total of 25cc of formula over the entire days totals. If he tolerates this over the next 4-5 days, then we will again increase another 5cc/feed. As we increase the feeds, we will also slowly decrease the TPN until, hopefully, we will be completely off TPN. If his gut tolerates all of this, then they will try to switch his IV cyclosporine to oral, and then he would really have no need for the central line anymore (except for blood draws, but that should become less and less too). We probably won't be ready to take him to the feeding clinic to work on table foods and getting him to actually EAT until we know his gut can tolerate just the elemental formula first. That part of the picture will be a longer, tougher road.
Brian also got a follow up Chest x-ray yesterday so that when he sees the pulmonologist next week, that will be all done and ready. He will see her on Tues after he sees the oncologist again.
His labs were done today at the Pediatricians office. The liver function studies continue to come down closer to normal, and his chemistry panel was fine. The Cyclosporine was up a little, but they are going to keep the dose the same and recheck it next week. After that, they will cut back on doing the weekly labs. We will then only get a CBC once a month and the LFTs and chemistry and cyclosporine levels every two weeks.
Brian continues to make progress with his walking. Every day it seems he takes more and more steps without holding onto things.....it used to be one or two steps alone, then 3-4, now he has taken as many as 7-8 or 9 without any help. And sometimes he will even just stand for awhile without holding anything too. There were days that I thought this would never happen. It's really cool to see him becoming more mobile.
It does open up a whole new world for both of us though with this new freedom!!
That's about it to catch up for the week. I hope your Easter/Passover holiday was nice and that this finds you doing well now.
Take care,
Niki
Wednesday, April 19, 2000 at 04:59 PM (CDT)
Hello Friends and Family,
Just a quick update. Yesterday Brian went in to the oncologists office for his exam and labs. I completely forgot to draw his cyclosporine levels before we went, but they are alright with that. We'll check it next week before his pediatricians appt.
Most of the labs were fine. A few of the liver enzymes went up a bit instead of the downward trend they have been on....not sure why, but at least the jump wasn't very high. We'll just keep an eye on it.
The most important thing to come from his visit though, is that after talking with the transplant team in Omaha, we've gotten the ok to go back and see the GI specialists and start the work on getting Brians feeds going......whether that is going to be learning by mouth with table foods, or just increasing his formula g-tube feeds, I don't know, but at least we're going to move forward. If we could get him to eat, that would DRAMATICALLY change our (and his) lives!! It would mean we no longer need an IV for TPN (IV nutrition) and no longer need to give IV meds (they could be given--hopefully-- by mouth), and he would no longer need a g-tube!! I can't even imagine our lives without all those hook ups!! Then all we would need to work on would be his oxygen tank!! Ok, ok, one thing at a time, but I'm excited for even the possibility of being freed up from those things! It will probably take time to get there, but we'll just keep taking our baby steps til we get there. Speaking of baby steps, he has actually been taking more steps on his own now too. We catch him quite often walking from one piece of furniture to another without the usual holding on while cruising!! It couldn't come any sooner either.....my poor back can't take much more of carrying his 41 lbs around!!
Anyway, that's gonna do it for this week. Thanks for all your kind words of support and continued thoughts and prayers.
By the way, I entered in a new photo--it's from his first hair cut. Enjoy!
Take care.
all the best,
Niki
Sunday, April 16, 2000 at 03:14 PM (CDT)
Hi everyone,
This will be short and sweet. Mostly cuz there is not much to report. This week we went to the pediatricians office, got labs and everything else was pretty quiet--thankfully.
Brians liver function tests have continued to drop down closer to normal levels. I assume that this is because of the cyclosporine and mycophenalate working together against gvhd. The only lab that was out of whack was the cyclosporine level, but we still left him at the dose he's been on til we check it again. It seems to jump around a lot, but clinically, he is fine and his creatinine is ok. Since all the oncologists were out of town this week at the CCG conference, there really wasn't anyone who knew him well enough to ask about changes, so we'll just recheck on Tues and see what they say. Overall, he's doing well, so I'm not worried.
Eric and Jeff had a good trip to Texas and got back yesterday, and we are all back to our old routines. It was good for them to get away together and visit family as well. And Brian and I had a good, pretty quiet week too.No more major traumas or dramas........I'll take that anytime!!
Hope this finds you well and happy. I'll write again soon.
Niki
Sunday, April 09, 2000 at 12:44 AM (CDT)
Hello Everyone,
WOW!! As you can see, it's been a month since I've written! I just checked the guestbook too and there were several new entries---Thanks, thanks, thanks for all your notes! I love all of them. It's just been so hectic lately, that I haven't checked them in awhile and I apologize.
Now, to try and play catch up again.
The last time I wrote was two days after we spent several hours in the ER repairing Brians line. We ended up back at the hospital again the day I wrote......this time it was 10:30 at night before we got there, only we bypassed the ER this time and went up to the PICU. The repair done in the ER came apart at the repair site, so I didn't want to deal with that again. The intensivist said he would do it for us. He did a much better job, and then kept us there for a couple of hours to run some vanco thru the line to make sure it killed off any potential infections since it had been exposed when I found it open. We got home around 3am.
The following week, on Tues March 14th, Brian went in for his hormone studies at the hospital. It was an overnight thing. All went well. The results showed no problem with his thyroid or growth hormones, but his cortisol was still not producing on it's own. So, he is adrenally insufficient at this time and needs to be on hormone replacement.......he's only getting the amount that he would be making himself, if he could. The doc thinks this is happening because of the long term high dose steroids. And hoping that his own system will kick back in eventually. I hope so. I don't want to have to always worry about stressful situations causing an adrenal crisis the rest of his life!
Brian also got started with a new speech therapist. She has made tremendous progress already! He is learning more signs and even trying to say words with her.
His cyclosporine dose has been going up and down over the past month, but I think we may finally have it at a good level, especially since we began another drug to help treat his GVHd. They started him on something called mycophenalate. It is a chemotherapy drug, but a fairly low oral dose, and is supposed to help tremendously with rejection. It has a lot of side effects that we really weren't crazy about, but at the moment, unless any of those get really bad, we are hoping that the benefits outweigh the disadvantages. So far, we have seen improvement in his liver function studies and his skin has gotten a lot better as well. The diarrhea is a tough one to gage......the drug is supposed to help treat gut GVHd, but it also can cause diarrhea.......so, it's tough to say if his gut is losing the GVHd........we'll have to see.
The week of the 20th of March, Brian got another hole in his central line; the third line problem in 2 wks. We knew that this line was nearing it's end and that we would have to replace it sooner that later (it was over 2yrs old at this point-so he got a lot of mileage out of it, for sure!), but with the third hole, it was finally time to replace it.....plus, we had been having more trouble drawing from it. So, the 24th of March, Brian went in to surgery and got a new central line. He did fine, and it was nice to have it working without worrying about it falling apart and all. We got as far as 10 days with this one.......three days ago, on Wed. April 5th, while Brian was at the oncologists office, his new line accidentally got pulled out!! He had some irritation and oozing of puss around the new site, so the lab tech got a culture of the site to check for infection. While she was doing this, the nurse had come up behind her and hooked Brian up to his respigam infusion, without saying anything. When the lab tech turned around to walk away with the culture, she walked right through the line and it pulled out of Brians chest. Ahhhhhhhh!! I immediately put pressure on his chest, but fortunately there was no bleeding. She felt horrible. It was very frustrating, but it was an accident. And now we know, that the line would have had to have come out anyway, because it grew out a nasty infection------a gram negative infection called pseudomonas. It's just that, it would have been better to remove the line under controlled circumstances that were less traumatic or emergent. We had to start an IV on Brian to infuse the respigam and to give the OR an IV access for surgery later that night. It turned out to be an extremely long day.......surg to replace the line (again!) was at 8pm---he did fine, and we were home around midnight. All is well now, and we are treating the infection with IV fortaz. To make matters worse, while Brian was at the oncs office waiting for surg, they decided to run some vancomycin to cover the poss infection.....he's had this a million times with no problem......well this time, he had a reaction!! Red mans face........so they had to treat him with benadryl!! Poor kid! But he slept until we had to leave for surgery and was fine. I am now overprotective of this line and very paranoid that something will happen to it! I hope this is the last line we have to put in, and look forward to the day when we can take it out.....ON PURPOSE!!
Brians oxygen needs have also decreased over the last month, which is very good. He was up to 2 liters before, but is back down to 1/2 liter. Not sure if its the added lasix, the inhaled breathing treatments or the new GVHd drug, but something is working to get his need down. We are very pleased about this. It would be nice as well, to get to a point where he didn't need the oxygen either.........it's hard to be patient sometimes, but we keep on moving forward and taking one day at a time in hopes of getting Brian to a point where his life can be void of all these interventions and somewhat normal. But for him, this IS all normal! Life without an IV hanging from his chest, a g-tube coming out of his tummy and oxygen tubing in his nose will be ABnormal for him! What a concept!
As I write this, Jeff and Eric are off in Texas for the week visiting family and Brian and I are hanging out here at home. We are hoping for a quiet week for once, and enjoying the nice 70 degree weather we are having (especially after the 2 ft of snow from last week!!).
I hope this finds you all happy and healthy and I want to thank you again for keeping up with all of us and for all your kind words. Take care til the next time.
Best always,
Niki
Friday, March 10, 2000 at 03:50 PM (CST)
Hi everyone. I didn't get a chance to post here til now, so I have a few weeks to cover. Last week Brian saw the pulmonologist and she ordered a CXR. It didn't look very good......pretty hazy and his heart was VERY enlarged. She wanted him to get another echocardiogram to see if the heart was ok. We saw the pedi onc on Tues and he sent us to the pedi cardiologist for the echo. It showed that Brians rt ventricle was larger than it should be, and said that this is due to the stiffening in the lungs. This isn't a major concern for the heart, it is just trying to compensate for the trouble in the lungs. The stiffening in the lungs could either be from fluid, infection, scarring or the fibrosis he has there. They put him on an extra dose of lasix in case it is excess fluid, and antibiotics in case it is infection, and we have begun giving inhaled steroids as well to see if this will help with the fibrosis and scarring. He was pretty fragile last week with this nasty cough he had, and whatever was going on in his lungs. He would become cyanotic with the smallest of stress (coughing or crying would cause his lips, hands and feet to turn blue), but he recovered quickly when he was done. His cylcosporine level was checked again, and this time was low, so they increased his dose from 5mg twice a day to 10 mg twice a day. His platelets broke the 300,000 range!! Pretty incredible!
This week, we had an unexpected trip to the ER. Wed night (the 8th) when I was about to hook Brian up to his IV meds and TPN, I found a hole in his central line. Major infection risk!! So, we talked to the pedi surgeon and he wanted us to come to the ER to get it repaired. By the time we got there, it was 8:30pm and we waited 2 1/2 hrs to be seen and it took only about 30 min to repair! So, by 11pm, I had Brian on his way back home......it was midnight when he got to bed! The next day (yesterday) we went to the pedi oncs office for exam, labs and respigam infusion (3 hr infusion). His cyclosporine level was checked again and was low still even though the dose was increased last week, so they are increasing up to 13mg twice a day now, and also adding another drug called microfenylate (MMF) to help with the graft vs host disease symptoms. His platelets this week were 320,000!!
Next week he goes into the hospital on Tues evening for the hormone testing (he will have been off the steroids for a week then) and will go home by lunchtime Wed. After that, depending on the results, we will set up an appt to see the genetecist to look into the other congenital abnormalities that Brian seems to have had at birth, and see if any of this plays a part in his development delays and growth delays.
That's about it to catch us up here. Eric was out of school a couple days this week with a cold and horrendous cough, and now Jeff is coming down with the same thing. I'm hoping Brian and I can stay away from this and stay well!!
Hope all is well with you all. Thanks for all of you who are signing the guest book. I appreciate it! Have a good week. Talk to you soon.
Niki
Monday, February 21, 2000 at 11:19 PM (CST)
Well, we met with the pedi endocrinologist today. He was really nice and seemed very knowledgable, and yet was very laid back and not pushy. He is recommending that we begin to wean Brian from the solucortef over the next 16 days, allow him to be off completely for about a week, and then do a pituitary stimulating hormone study. This should tell us which, if any, hormones he is not making on his own, and then how to treat him. The only thing we need to do is watch him closely as we get closer and closer to him being off completely, so that if he should have any kind of illness, he does not go into adrenal crisis. We will have an emergency dose of injectable solucortef to use if that should happen.
Tomorrow, we go to catch up with Brians pediatrician. We will be trying to find a new speech therapist now, because his existing therapist will no longer be available. It's hard to change, but sometimes change can be a good thing.
The weather here was beautiful today.....very warm. I've included a new picture into our photo gallery. It is from when Mark, Brians donor, was here for a visit 2 wks ago. Go and check it out. That's it for now. I'll update again as soon as I have anything new.
Warmly,
Niki
Sunday, February 20, 2000 at 10:16 PM (CST)
Well Hello everyone,
Tomorrow will be three weeks since I posted here last. Sorry. It's been a busy time. As I last posted here, we went to Omaha, back to the transplant center where Brian had his transplants for a workup on his GVHd (graft vs host disease). It was a busy time. Brian saw the oncologist, GI specialist, pulmonologist, cardiology for an echo, and endocrinology. He had labs, and he had an upper and lower endoscopy, with a liver biopsy and skin biopsy. We were there for five days, and started him on a new med for the GVHd....cyclosporine. The biopsies showed postitive liver and skin GVHd, but surprisingly not in the gut. With all the diarrhea he has had, we were sure that area would be positive. The onc. said it may still be positive, but just didn't show up on bx, but we started treatment anyway. His upper endoscopy did show however, that he has an ucler in the distal esophogus, esophogitis and reflux. So, they put him on prilosec, hoping to "tame" the inflamed areas in his esophogus and stomach.
One thing we found while we were there, was what a difference the lack of altitude makes for Brians lungs. I was able to take him off completely while I was there. The scarring and fibrosis alone are not enough to need oxygen, I don't think, but when you add the elevation and altitude that we are at in Colorado, it is enough of a difference to need the O2 here.
We also had a very thorough visit with the endocrinologist there. He was called in to see if we could get any answers as to why Brians weight continued to go up, even though we had been off the prednisone for 5-6 wks instead of slowly coming down. His thyroid was tested and was normal. But, it turns out, for some reason, he is no longer producing ACTH or cortisol. An MRI of his brain was ordered when we got home to check his pituitary, but it was normal. Until we can figure out why he stopped producing those hormones, he needs to be back on hormone replacement....so he is back on steroids.....just a different kind....solucortef instead of prednisone, and a lower dose than the pred. Brian sees the endocrinologist here tomorrow for a followup, and to see where we go from here.
The endocrinologist in Omaha, who is also a geneticist, wants us to follow up with the geneticist here to continue looking into the possibility that Brian may have an underlying problem compelely separate from his leukemia. Since he had several abnormalities at birth, it is possible that some of Brians current problems may actually stem from those and not just from the leukemia and transplant complications. Or, the leukemia may have come from those congenital abnormalities. Not that we really want to find out a whole new diagnosis, but it would be helpful to know if there is something else going on, so that we can move forward with it, deal with it, fix it if possible, and make whatever plans for his and our future as possible.
Tomorrow, we see the endocrinologist, and then the pediatrician on Tues. We will check another cyclosporine level on Tues as well to make sure the dose is still within normal, safe limits.
One other quick note; we had a visit after we returned from Omaha, from Brians donor, Mark. He had to come to town (Boulder actually) for a training seminar for his work. We went and picked him up and brought him back to our home for dinner. It was a short visit, but so very nice. I think it was especially nice for Mark to see Brian more like himself and happy and playing at home. The first and only other time he had seen him was during Brians second transplant, and he had just come off a month of sedation and had a fever as well. So, this was a treat for him, and a real pleasure for us. He is and always will be "Brians angel", and we are happy to have him become a part of our family. We hope the next time, he can bring his new wife and stay a little longer.
I appreciate all of your notes of support while we were away in Omaha, as well as since we've returned home. They are what get me by most days, when things are tough. Again, as always, I wish you all the best in your lives too.
Til next time,
Niki
Monday, January 31, 2000 at 08:22 PM (CST)
Hello Friends,
It is official now. We are leaving tomorrow and flying to Omaha. Everything got approved, and set up, and we are off. We will have labs and see the transplant team and pedi GI doc tomorrow afternoon. If necessary, they may do another GI scope and bx on Wed. From there, I don't know what is planned. Will have to wait and see.
We will be staying at the Nebraska House at the Lied Transplant Center (pronounced Leed) and if necessary can be reached at the toll free number-- 1-888-805-1115. Then ask to be connected to our room. After 8:30 pm central time would probably catch us in our room.
We return Sun the 6th, and hopefully it will be with the difinitive answers we needed and the beginning of the next treatment to battle this nasty transplant complication.
Thanks for all your support. Sign the guestbook if you haven't yet, or even if you have, I still like to see any new messages or thoughts you have.
Take care til the next update.
Best always,
Niki
Friday, January 28, 2000 at 10:31 PM (CST)
Hi everyone,
I'm going to try to make this brief. We saw the oncologist this week, and Brians liver enzymes continue to go up, his dry looking skin now looks more like a skin GVH, and the diarrhea still persists. Brian was supposed to have his respigam infusion this week, but the ins co threw in a denial halfway through the season and we are currently fighting that. It appears that it will be re-approved, but we will have to go back and make another trip to get it. The infusion is about 3 hrs and is for warding off all kinds of respiratory viruses, including the very serious RSV. Anyway, the onc. wanted to pow wow with the pediatrician and the transplant team in Omaha about whether it was time to start Brian back on treatment for GVH and said he would get back to us on Thurs (yesterday) about the new plan. Well, at 4pm yesterday, we found out that what they want to do, is have Brian go to Omaha for a short diagnostic visit. They feel like at this point, it is hard to treat and care for him long distance over the phone, and that before they make treatment decisions, they should see him in person. The kicker is that they want him there NEXT WEEK!! The doc there will be out of town the following two weeks and waiting til the end of Feb. could be risky since Brian is already getting worse each week. So, we've been hustling around today to get ins approval, trip plans made, oxygen set up on the plane and on the ground in Omaha, packing, making arrangements for Eric here at home while Jeff works, etc. etc. A lot to do in a short amount of time. I am hoping to be in touch with everyone while I am there by e-mail, but can use this website to update as well. I will look forward to hearing from any of you while I am there, since it will be my only contact with home, family and friends. I'm not sure if my netzero account can be accessed from threre, so I will post my Hotmail account address for you to write to while I am away. The address is: daubach@hotmail.com
I'll update again as soon as I can. Thanks for all your prayers and support. Talk to you soon.
Niki
Saturday, January 22, 2000 at 06:16 PM (CST)
Hello again,
I'm sorry to be so behind in journaling. So much to keep up with. The results of Brians biopsies were all pretty good. Especially the bone marrow. It still shows no evidence of leumkemia cells. Yeah!!! The lung bx did not show anything significant either. No infections, no interstichial lung disease...just scar tissue and some fibrotic lung disease. Nothing that we know of to explain Brians continued need for more oxygen and the lack of reserve he has. We are considering another pulmonary opinion just for a fresh look at him and any other possibilites that we might be missing. The gut bx also showed no GVH, however, because he still has such bad diarrhea, the thought is that he probably DOES have gut gvh, but that it is higher up in his colon and not where they biopsied him in the rectum. It has been recommended to sit tight and watch him for another month without changing anything we are doing now unless something really gets bad. His liver function studies are continuing to come back up after going down to almost normal. Question??? Is this liver gvh? Is is related to TPN? Not sure about this sudden rise. But, like everything else that has gotten worse, it has happened since being off the steroids. So, we just sit and wait and maintain the routine we have now, unless his clinical picture changes even more. The "hurry up and wait" game. It gets kind of old.
I've taken Eric skiing a few more times, and he is getting better and better. It's pretty fun and I'm glad to see him doing well and enjoying himself. Not much else going on with us. Erics really into football so we've just been watching all the playoff games and getting ready for whoever ends up in the Super Bowl. Since it won't be Denver, it doesn't really matter, but he enjoys watching anyway and is hoping that Jacksonville goes this year (since his Aunt Karey and Uncle Jamie live close by in Orlando).
Hope you all are well, and I will update again as I have more information. Take care.
Niki
Sunday, January 09, 2000 at 12:03 PM (CST)
Well, Brian had his biopsies done Friday and all went well. He came home yesterday and seems to be doing well. His oxygen need is up a bit more, but I'm assuming that that is due to the fact that he just had a lung bx and anesthesia. Now the waiting game begins. The results of the various biopsies will be ready throughout next week.
I'll post again as I have more info.
We had Erics b-day party yesterday as well. It went great! We held it at a pottery studio and the kids all picked out ceramic animals to paint, glaze and fire. They also all worked together on a commemorative piece for Eric to keep....it was a picture frame.
That's all for now. Hope all is well with you all.
Niki
Thursday, January 06, 2000 at 11:05 PM (CST)
Hello Everyone,
Well, tomorrow, Brian goes in for surgery. He's having a lung biopsy, gut biopsy, and bone marrow biopsy. Hopefully these will all net helpful results so that we can properly treat his lung and diarrhea problems as well as finding out the status of his cells- - - hopefully they are still minus the leukemia. He should only be in the hospital over night if all goes well. I will post again as soon as I can to let you know how things went.
Thanks for your prayers and support.
Niki
Sunday, January 02, 2000 at 09:12 AM (CST)
Happy New Year everyone!
Sorry it's been awhile since I last updated. With the holidays, it's been busy.
I won't go into detail here, but basically the past 10 days have been filled with trying to figure out why Brians oxygen needs have increased and why his reserve is so low.
We went to have a CAT scan of his chest, and an echocardiogram and EKG last Tuesday.
I believe they said the echo and EKG are unchanged since the last one in Sept. The CAT scan of his lungs did show some areas of concern that is probably intersticial lung disease. This is what he had before from the last transplant, but since we were treating Brians GVH with steroids, it's possible that his lungs were benefiting from the steroids as well, and now that he is off, they are not doing as well. The radiologist needs to compare this CAT scan with Brians last one done ~6wks ago, but they were having trouble finding the previous scan. I'm hoping that they have found it so we can procede with whatever needs to be done. The pulmonologist said that if the most recent scan is worse than the last, she will want to do a lung biopsy to pinpoint exactly what we are dealing with and treat it appropriately. If we do this, we will also get a bx of his gut to check the status of his GVH while he is under anesthesia as well. So, this next week should tell us all of this.
That's about it for now. Our holidays were nice and pretty much uneventful. At least they were spent at home instead of the hospital!!
Hope all of yours were nice as well. I'll try to update again soon.
Take care.
Niki
Tuesday, December 21, 1999 at 04:32 PM (CST)
Seasons Greetings Everyone,
This weeks entry is a bit delayed since we did not see the oncologist until Thursday instead of Tuesday.
Brians labs are once again normal; his platelets went up to 151,000 and his liver function studies have continued to come down. He's been off steroids now since Tuesday, and although his diarrhea is a bit worse (a lot of breakdown of skin on his bottom), everything else seems to be ok so far. The question is, will his lungs and GVH worsen with him off the steroids now? This is a dangerous period of time now and we will have to watch him closely. Christmas is just four days away and it would be nice if we can be home and out of trouble for the holiday. Keeping our fingers crossed....
We had a couple of incidents this week with Brian to keep us on our toes. First, the good news is that he is pulling himself up on the furniture and fireplace, etc. The bad news is that when he pulled himself up on the fireplace hearth, he leaned into the pellet stove and burned his cheek!! Geez!! It has already healed, but it was something that makes us realize that with his new mobility, we have to watch him a little closer. All normal kidstuff, but for him, it's two years late!! Our other scare was finding a big whole in his oxygen tubing after seeing that he wasn't looking too good. We checked his saturation level on the pulse ox monitor and his O2 sats were about 70 %. When I checked the tubing and changed it, his sats came right back up. Thankfully!! The old tubing looked like it got chewed up with the vaccum! Maybe that's a good excuse to stop cleaning!! hee hee
The rest of us are doing ok. Jeff had a cold that seems to be turning into a sinus infection, which leaves him a bit miserable. The rest of us are catching that cold as well. Hopefully, it will go away soon and leave us all feeling better before Christmas. Eric is counting down the days til Christmas and getting very excited. He has even e-mailed his wish list to Santa and Santa sent him a letter back!! He thought that was pretty cool!! This is a fun age with him this year!! I think we may be even more excited to be sharing all of this with him. And although Brian may not know what this is all about, I think he will have more fun this year than in the past. I know he can at least help open gifts this year.
Since my next update may not be until after Christmas, I will wish you all a very happy holiday now. And thank you for all your good wishes and prayers along the way for us as well.
Best always,
Niki
Thursday, December 09, 1999 at 11:39 PM (CST)
Hello Everyone,
I just have a minute before I try to get some sleep for the night. Brians visit this week with the pediatrician went well. Really no changes. He is back to bearing weight on his injured leg, is trying to crawl and pull up on things and getting pretty mobile despite the fact that his weight is up AGAIN another 1 1/2 lbs since two weeks ago. The added weight does not seem to stop him from doing what he wants to do. Just imagine after the steroids are finished (one more week!) and the weight starts to come off how much easier it will be for him to get around.
Everything else here is fine. We had about 18" of snow last Friday, but it warmed up and melted some of it off. We got another small snowstorm yesterday but it didn't amount to more than 3-4". We had a busy week with Eric; he had three birthday parties (two that he made it to), had his friend sleep over (they decided to get up at 4:30AM--I said "NO WAY!), he had his preschool Christmas program where they sang Christmas carols, and we had Jeffs birthday. In fact, if it falls into place, Jeff and I might actually be going out to dinner tomorrow night for his birthday!! Alone!! Together!! A novel thing!! Hopefully it will work out and our friend will make it up to watch the kids.
Anyway, that's it til next week. Stay warm and well til then. And thank you all for the kind words and support in the guestbook.
All the best,
Niki
Thursday, December 02, 1999 at 11:04 AM (CST)
Dear Friends,
Well, we got great news this week at Brians oncology visit. I took him on Tuesday for exam and labs and to get his monthly dose of respigam (to ward off respiratory viruses like RSV, etc). For the first time since he was born, he had COMPLETELY NORMAL LABS!! I'm seriously thinking of framing the lab results!! His white count was 7.0, his hemaglobin was 14.8 and his PLATELETS!!!! They were 147,000!! (normal range 150,000-400,000) This is just so cool! Since he was born, he has had weekly platelets and sometimes more often during transplant, so to go without an infusion for over 3 mos, and have him start making his own, is incredible!!
So, now we move on to taking care of just the side affects of the transplant and treatments. We weaned the steroids one more time and if all goes well and his diarrhea doesn't increase, he will be OFF of steroids in 2 weeks. And then maybe my little "butterball" can get back to being in his own little body. And perhaps too, he will become even more mobile. It HAS to be easier to move around and find balance to walk without that extra weight! And speaking of weight and walking; he is back to weightbearing on his leg and walking with his little walker. I'm so glad for that too; he didn't need ANOTHER reason to be immobile.
So, all in all, this was a good visit with good news. The future is always uncertain, but we will just move on one day at a time and take everything (good and bad) as it comes.
I'd like to say that I read some of your guest book entries and I thank you all so much for your kind words and prayers. It is with help from all of you, that we continue to get through this "roller coaster ride". Thank you soooo much. I hope you will continue to check back from time to time to see what's new. I am currently putting together another website for Brian that is a little more involved and will hopefully give you all a better picture of what Brian has gone through in his short life.
Until next week, I send you all good wishes and hugs,
Niki
Sunday, November 28, 1999 at 04:25 PM (CST)
Dear Friends,
Welcome to our first attempt at creating a website for Brian and his condition!
This is my first update on this website. I plugged in some other updates back to the first of November just to give a little bit of history. There is no way I could find the time to go all the way back to transplant or before. I will probably make another page to hold all that at some point, but for now, this will just go back to Nov. 1, 99.
Brian is continuing to bear weight on his leg again and is even walking with his walker and "cruising" around the furniture as well. I am sooooo glad to see this again. I hope he will continue and get stronger so that he can begin to catch up and walk on his own. He is even trying to crawl a little, which is new for him. He has just been getting around by scooting on his bottom everywhere he wants to go! His upper arm strength is getting stronger and he is trying very hard to pick up his heavy head while crawling---so that's progress!!
Jeff did a motorcyle ride on Sunday--it's a yearly event put on by the Harley riders and the Marines called "Toys for Tots". They all ride to a specific spot where they drop off their donated toys, and then all ride together around town to promote the event. He said there were over 400 Harleys and they had police escorts and there were people watching along the roadway just like a parade. Pretty awesome! This means something to us, because when Brian was first diagnosed and in the hospital at 4mos old in Dec of 96, they came to his hospital and donated toys to him. I still have those and they mean a lot to us, since this was the beginning of our long road to where we are today.
Eric and I went to the movie and it was great! Just as good if not better than the original. Disney sure knows how to entertain the adults as well as the kids!
Eric and Brian and I decided to trek up to Ft. Collins (80 some miles away) for Thanksgiving at my aunts. Five of my nine cousins were there, and although there were no kids there (better for Brian), Eric still had a good time and got all the attention he wanted! They also have this animal room from Bills game hunting days and it's full of lots of different stuffed animals. Eric loved this (it's not my thing, but I thought it was kinda cool too)and knew most of the animals in there. I'm not sure if he was more impressed with all the animals in there, or if Bill was more impressed with Erics knowledge of them all!
We had a good dinner and played games, and then headed back home. The only thing I really missed is the leftovers!!
Yesterday, Eric and I went to his best friend Johns b-day party and then Jeff took Eric to see "Toy Story 2" again.
Tuesday Brian and I go to the oncologists office for exam, labs and respigam and I will write again after that on Wed.
Thanks for visiting our new site. Come back often to catch up on what's new. And sign our guestbook if you want.
Take care.
Niki
Wednesday, November 24, 1999 11:28am (MST)
Hello Friends,
I realize that many of you may not be home at this point to receive this, but I will send it anyway and wish you all a Happy Holiday.
There is really not much to report this week. Which is ok. That means at least no bad news to report.. We went to the pediatricians office yesterday and only got the liver function labs. Since his CBC has been so stable, we will only get that every other week. I haven't heard yet what the results of the liver function studies are, but I assume they are still ok. We are not making any changes this week. We finished up the 3wk course of antibiotics for the sinuses last Fri, and since there wasn't an incredible difference from those, we have started another antibiotic for 10 days. There seems to be a little bit more of an improvement from this one. Hopefully, this will do the trick and we can get his oxygen turned back down to just the minimal amount that he needs up here. The wean on the steroids will not change again til next week if the diarrhea is not worse and the liver function studies are ok. Next week at the oncs office it's time to get respigam again (3hr infusion to ward off respiratory viruses).
His leg seems to be somewhat better now and he is putting more weight on it again, but not for long periods, so we aren't pushing it too much. The pediatrician said if there was enough damage to the bone, the alk phos would have been higher and it was stable, so I'm a little more encouraged about his lef and the osteoporosis that was seen on the x-ray.
So, that's about it. We aren't sur yet where we are going tomorrow for the holiday, or if we will go anywhere since Jeff is working 24hr shift. We have plenty of invitations, but they all have their drawbacks with concerns for Brian---either long distances to go, or too much exposure to other little kids and their "germs"!! Nothing personal--and everyone understands that too.
I am picking Eric up early from preschool today and taking him to see "Toy Story 2" at 5pm. I know he is excited to see the movie but not looking forward to the "loud" theatre! We'll take cotton!
We wish you all the best this holiday and look forward to hearing from you again soon. Take care.
Warmly,
Niki
Wednesday, November 17, 1999 9:49pm (MST)
Dear Family and Friends,
Just my weekly update on Brian and the rest of us. Yesterday was our trip to the oncologists office for labs and exam. I've got ggod news and so-so news. The good news is that his counts are still doing really well. His liver function studies are continuing to come down and his platelets.......wait til you see this!......are 110,000!!!! (up from 89,000 last week) ALL BY THEMSELVES!! I'm sorry to make such a big deal about that, but for almost 3 yrs we have had to give him platelets EVERY week! So, he has gone since Aug 13th without an infusion and is making them on his own. Our visits are just so short now at the oncs office, its weird! We used tobring videos and toys and now we barely stay long enough for a diaper change!! The so-so news is that his weight is UP again!! Can you beleive it? Since we returned from transplant Aug 13th, he has gained 10lbs! He is now 38 lbs but has grown any in length (32"). Dr. Smith was getting a bit concerned since we have been continuing the wean on steroids and decreasing the volume on his TPN from 1200cc a day to 820cc a day, and not only is he not losing weight, he is gaining. So he called the transplant team in Omaha to see what they thought, and they think it is still related to the steroids and just regular growth and said to hold out a little longer with the current plan. We made another wean on the steroids and should be off in a month if the diarrhea doesn't get worse.
His cough and sinus drainage are marginally better after the 3wk course of antiobiotics, but still present. I need to check tomorrow with the pedi to see if he wants to continue them longer or do something else. his cough, although not as often, still sounds terrible. It's awful! BUT, he is sleeping better through the night again and we no longer have to set the alarm for 3am to change him, cuz with the decrease in TPN his diaper can hold out til morning now. I'll take that!!
Our only other Brian problem is that a few nights ago while Jeff was helping him walk, he spread his legs out adn fell into the splits. He cried very hard and stopped bearing weight and scooting around. So, Monday, Jeff took him down to the pedis office to have it checked out and got an x-ray. No fracture was seen, but they decided to splint the leg to keep him more immobile until we could check it again. We're supposed to try weight bearing again on Fri. If it's not better, then we might have to get a bone scan to see if something picks up on that that wasn't on the x-ray.
So, if he didn't weigh enough before, now we have the added weight of the plaster splint! It's always something, isn't it? If he didn't maintain his happy mood through all of this, I know I would be crazy by now!
Eric has had to stay home from preschool this week so far because he isn't feeling well and sounds "croopy". So my usual "semi time off" has been a bit of a change this week. I've tried to make the time at home together worthwhile for him, but he sometimes doesn't like to "share" me with all my responsibilites. I've tried to explain that these are the things I do when he is at school so that when he is home, I can spend more time with him. I'm not sure, but I think he kind of "gets it" now. I love spending time with him, but for both or our sakes, I hope he is better tomorrow and able to go to school again.
Finally, Jeff and I got out alone (novel thing) last Thurs for about 4 hours and went Christmas shopping for the kids. It was actually fun and we got everything we needed to find. One less thing to worry about later. The hardest part though is now having to wait to share/give these things to them. We were both so excited about our finds, knowing that they are going to really like them. It's so fun to give and see happy smiling faces!
Well, I guess that catches us up for the week. I'll update again next Wed. after our exam and labs at the pedis office this time.
Hope you are all well and if you are traveling next week and won't be home to receive the next update, I will wish you a happy and healthy holdiay now.
Best wishes,
Niki
Wednesday, November 10, 1999 10:15am 9MST)
Hello everyone,
I didn't have the lab results back yet when I wrote my update, but I have them now. Brians platelets continue to hold and even are going up--still on their own. last week they were 77,000 and this week they are 89,000. Without an infusion since Aug 13th! His white count is 13,000 and his LFT's (liver function tests) are continuing to come down. Yeah!! I hope that means the GVH is leaving the liver and will soon leave the GI tract as well. The encouraging thing is that his diarrhea is not getting worse as we decrease the steroids; so maybe the GI GVH is slowly getting better. Wouldn't it be nice to have his gut heal enough to stop the diarrhea so we can go back to feeding him his full volume of formula and stop the TPN? And then wouldn't it be nice to try to introduce table foods to him again and have him actually eat them? He doesn't know what he is missing! And then wouldn't it be nice if we could take out his g-tube (and fight with him to get him to take his meds by mouth!)? And as long as I'm dreaming about the future, wouldn't it be nice if he starts walking and talking too? Ok, Ok, so, back to the one day at a time mode. It gives me something to look forward to though.
That's it til next week. Take care.
Niki
Tuesday, November 9, 1999 9:54pm (MST)
Hello Everyone,
It's time for our weekly update on Brian. I've decided to just write on Wednesdays after he sees either the pediatrician or the oncologist on Tuesdays (they swap every other week). This time it was the pedi. We got labs done to check his CBC, electrolyte panel and liver function studies.
Brians weight is up AGAIN this week; another pound from the pedis office 2 wks ago as well as the oncs office last week. And this after we continue to wean the steroids and cut back on the fluids with his TPN. I guess it just takes time. We are going to cut the rate/volume on the TPN again and go up on the lasix just a wee bit. The doc thought even though he is still gaining weight, he looks acts a lot better. More mobile, and interactive, more energy. So that's good. His P.T. also thought his mobility has increased with less discomfort as well. So, day by day, week by week, we will get there. I hope it's sooner than later though, cuz he's one heavy boy! He's found a new word too--"uh-oh". He is also using the sign language for "more" or "again". His O.T. taught him that and it's cool to see him using it. He also is doing this weird/funny thing where he makes a fist and knocks on his head and says "knock-knock" (although it sounds more like "gonk-gonk"). I have NO idea where that came from.
Eric is doing well too. He went to try karate class on Sat. with his best friend John, but wouldn't get up to try it. Afterwards, his friend came over to play for the day. Then on Sunday, I took them both to one of the big fire stations in Denver for a tour. (I have a friend who works there) They thought that was pretty cool. It's one of only two that has two floors, so the fireman slide down a pole from the sleeping area. And they really like honking the horn on the truck--it's a pedal on the floor. Even I was surprised by that.
Not much else going on. I hope this finds you all well.
Take care,
Niki
Tuesday, November 2, 1999
Hello everyone,
It's late and I have too much to report from todays visit, but I'm going to try to do it quickly.
The morning started off so perfect. I got up on time, got Eric and Brian both ready, myself ready, packed the zillions of things in the care that we all needed for the day and got on my way ON TIME--a miracle for me!! I'm ALWAYS running behind! But not today! I got Eric to preschool and headed down the road toward town to get Brians CAT scans and doctors visits done and got stopped briefly by about 60 elk jumping the fences and crossing the road. It was beautiful!! The CT scans went very well; Brian held still for both (without sedation) and we headed to the oncologists office for his respigam infusion, labs and exam. The pulmonologist came over to see him there and gave us the CT results too. His sinuses are totally full and blocked. It's amazing that they aren't infected! So, they are going to start him on a 3wk course of a different anitbiotic to try to clear them out and hope that once they are clear his cough will disappear too. His Chest CT was pretty much ok except for some intersticial inflammation. It may be related to his previous lung damage. We'll just have to see how his ozygen needs and cough are after the antibiotics before we look further into any more lung problems. We should have been ready to head home around 2 or 3pm (after arriving at 9am), but while we were at the oncs office, we found a hole in Brians central line!! Great!! I'm thinking, "great, now we're off to surgery!" But we talked to the pedi surgeon and he said he could repair it, but we had to do it in the ER (the last place you really want an immunosuppressed kid!). We waited there for 1 1/2 hrs before the surgeon could get there. Since Jeff was working, I had to make arrangements to have Eric picked up from preschool since I wasn't going to make it in time. We finally got the central line repaired and headed home around 6pm. I picked up Eric from his friends, rushed home to get Brians TPN started (2 hrs late!) and 7pm feed started (20min late), but STILL had to get the pharmacy to pick up the new antibiotic before they closed at 8pm. So, rather than pack the boys and all of Brians pumps and portible oxygen up to go, I called the neighbor to come over (bless her!) so that I could get there and back without involving them.
All in all, the day went pretty good. It was just long. One of my mottos that gets me through things like this sometimes is that, no matter how bad things get--they could always be worse! Like, I could have been home already when we found the central line hole and had to drive the 35 miles back into town, or it could have been the middle of the night, or it could have been bleeding, or there could have been a snowstorm, or it could have gone unnoticed and gotten infected.......you get the idea, right? So, we survived!
The only other changes for Brian are that we are decreasing the steroids again (yeah!) and they are cutting some of the TPN volume again to help cut his weight, and we have to start doing nasal washings 2-3 times a day (oh! he is going to LOVE that!) and adding a nasal steroid to help open up the nasal and sinus passages. We're also going to start some lasix again to help pull off some of the extra fluid and puffiness he has gotten.
So, a lot of ground covered today, hopefully with progress in the near future.
I'll write again next week.
Niki
Monday, November 1, 1999 22:46:00 (MST)
Hello everyone,
I know it's been awhile since I've updated on Brian, but mostly because there hasn't been much new. He's hanging in there. The cough and nasal drainage still continues and so tomorrow he is getting a CT scan of the chest and sinuses. His pediatrician visit last week was fine and he continues to hold on to platelets without any new infusions. His liver function studies are also hanging in there without going up. We did make a change to his TPN (iv nutrition) and cut the total volume down. This will cut some of his calories and hopefully bring some of the excess weight gain back down. I know that some of the weight gain is also from the steroids, but those are being weaned down as well. We also see the oncologist tomorrow and they may make another decrease in the steroid wean. He will also get his first dose of respigan for the winter season to cover him for many of the respiratory viruses out there. It's a 3 hr infusion, so it makes for a long day. Especially when you add the time for the CAT scans as well. So, I need to go now and try to get some sleep if I can. (ha ha)
Hope all is well with you all. Take care.
Best always,
Niki
Sunday, November 28, 1999 at 09:49 AM (CST)
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