Journal History
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March 26, 2006
Hi,
Yes, I know. It's been a looooonnnngggg time since we updated. A lot has happened, too.
Here we go....
Jeremy turned 5 last October. Of course, he had a wonderful birthday party with all of his friends and was thrilled with his construction vehicle birthday cake (complete with "dirt!"). He is growing so fast - but he's still smaller than many children his age.
Last summer, Randy, Jeremy, and I went to Madison to testify before the State Senate Health Committee about the importance of donating umbilical cord blood after a baby is born. It's "waste" unless it's properly collected and used to save a life of another person. We were thrilled to be there, along with Dave & Cindy Cooper. They gave an awesome testimony. It was hard to follow them - how do you top what they had to say? Our turn was coming up... but, Jeremy had to go potty. So, Randy took him. Do you know what that little stinker did? (Jeremy, not Randy). He locked himself in the bathroom - and WE WERE UP NEXT!!! Randy was "slightly" nervous. You think?!!!
After the bathroom fiasco, our names were called. We said what we wanted to say. Well, Randy and I did. Jeremy was too busy hitting the microphone, dropping a truck on the table, and trying to run around. We were mortified. This was the State Senate Health Committee. In Madison. In front of all these people. Jeremy didn't care. He was having too much fun! It didn't matter too much. Everyone there thought he was cute. Why is it that everyone else can think your child is acting just fine and is so cute, but you, as a parent, are mortified by their behavior?!
It couldn't have been too bad, though, because we were invited back in December when Governor Doyle signed the bill into law and then named it "Jeremy's Law". See? Couldn't have been too bad. I guess we were worried for nothing!
We were very honored and humbled to have this law named after our little boy. When I was talking to Anne Rugari (Gina's mom) afterwards, I mentioned that the next day was my birthday. She immediately said that it was Alex's birthday present to me. I got goosebumps. (Alex was our first son, who died at 1 year back in 1988, for those of you who don't know.)
Let's see.. where was I? (Jeremy keeps coming in and asking if I'm done with the computer yet - he wants to play Pajama Sam on the computer.) Oh yeah - I lost my job back in January. Lovely way to start the new year, huh? It was a mixed blessing, though. It really wasn't the place for me to be, so it was good to get out of there. I have also been taking Jeremy to his therapy appointments and lining up the doctor appointments for Jeremy's orthotics (more on that in a bit). So I feel it was God's timing that I lost my job. I've had time off to get other things done that HAD to get done.
Our other son, Adam, went to New York City for a choir trip. He had a blast! He was so amazed and very glad that he went. (This, after not wanting to go because it would cut into his spring break time with his friends here at home - kids!!!!! aaaahhhh!)
Back to Jeremy's orthotics. Jeremy's hamstrings and heel cords are very tight and are effecting his walking and ability to do every-day things (like getting dressed, walk up and down steps...). Even with twice weekly therapy sessions through the school system, it has worsened. His balance is very poor. When we put him down, we have to make sure he has his balance under control before we let him go, or will fall right over. He can't run - just a very fast walk, which is on his tip-toes. We will be taking him to Mayo Clinic in Rochester, MN for him to receive Botox injections, then he will be fitted for ankle-foot orthotics. We hope that his will help him. He starts Kindergarten in the fall and we want it to be a good experience for him.
I hope I haven't forgotten anything.
Thanks for checking in on us. We love the messages that we get. You guys are amazing!
Love,
Tanys, Randy, Adam, Jeremy, and Angel Alex
Wednesday, March 24, 2004 9:41 AM CST
New Pictures Added!!!
Monday, March 22, 2004 10:00 AM CST
I know I have said this so many times before - and I'll probably say it again and again - I'm sorry it has been so long between updates. After all, Jeremy's birthday was 5 months ago....
I am happy and thankful to report that Jeremy is doing great. He is enjoying his new daycare and has even been showing his "true colors". His teachers tell me that they take the kids outside to let them run off their excess energy. Personally, I think they just want JEREMY to run off his excess energy. Boy, does that kid have ENERGY!!!! It's great!
Last summer, when his Birth to Three therapies were getting ready to wrap up, his teacher Julie would meet us at McDonald's to play (who eats at McDonald's??? It's a big giant playland!!). He has since associated Julie with McDonalds and vice versa. Well, the other day we were eating supper. This is the conversation:
Jeremy: Julie (out of the blue).
Tanys: Julie? What about Julie?
J: I want to see Julie.
T: You do? Where do you want to see Julie?
He thinks for a minute. You could see it - his eyes looking up; face scrunched.
J: McDonalds!!!
What a hoot! It's been months since we've been to McDonald's with Julie - but he remembers.
Jeremy is talking a lot more. He says so many words but he can be hard to understand. I talked with a speech therapist that I work with (who just so happened to be Jeremy's B-3 therapist) and she said that he's got the words down pat. He knows what to say; he knows the appropriate words. It's just that his pronunciation and articulation needs work. She suggested that we praise him for speaking the right words, but then to repeat back to him the correct way to say and try to get him to say it correctly. He's doing OK with this.
His hamstrings are still tight and it's a struggle to get him to stretch them out. Plus, he's old enough (and smart enough) to realize what I'm trying to do. I'm just thankful he can walk and jump. Oh yeah! He learned to jump at Christmas time. We were so thrilled!
Jeremy has been doing better with eating too. Still not a normal kid appetite, but he IS eating better. I think being around other kids his age at daycare has really helped that along. His teachers say that they are thrilled when he asks for "more" (so are we...).
Thanks for checking on us and being patient with the lack of updates. I noticed one guest book entry said "long time, no update."
Thank you too for your prayers and good wishes.
Love,
Tanys and Randy
Adam and Jeremy
Wednesday, March 24, 2004 9:39 AM CST
New Pictures Added!!
Monday, March 22, 2004 10:00 AM CST
I know I have said this so many times before - and I'll probably say it again and again - I'm sorry it has been so long between updates. After all, Jeremy's birthday was 5 months ago....
I am happy and thankful to report that Jeremy is doing great. He is enjoying his new daycare and has even been showing his "true colors". His teachers tell me that they take the kids outside to let them run off their excess energy. Personally, I think they just want JEREMY to run off his excess energy. Boy, does that kid have ENERGY!!!! It's great!
Last summer, when his Birth to Three therapies were getting ready to wrap up, his teacher Julie would meet us at McDonald's to play (who eats at McDonald's??? It's a big giant playland!!). He has since associated Julie with McDonalds and vice versa. Well, the other day we were eating supper. This is the conversation:
Jeremy: Julie (out of the blue).
Tanys: Julie? What about Julie?
J: I want to see Julie.
T: You do? Where do you want to see Julie?
He thinks for a minute. You could see it - his eyes looking up; face scrunched.
J: McDonalds!!!
What a hoot! It's been months since we've been to McDonald's with Julie - but he remembers.
Jeremy is talking a lot more. He says so many words but he can be hard to understand. I talked with a speech therapist that I work with (who just so happened to be Jeremy's B-3 therapist) and she said that he's got the words down pat. He knows what to say; he knows the appropriate words. It's just that his pronunciation and articulation needs work. She suggested that we praise him for speaking the right words, but then to repeat back to him the correct way to say and try to get him to say it correctly. He's doing OK with this.
His hamstrings are still tight and it's a struggle to get him to stretch them out. Plus, he's old enough (and smart enough) to realize what I'm trying to do. I'm just thankful he can walk and jump. Oh yeah! He learned to jump at Christmas time. We were so thrilled!
Jeremy has been doing better with eating too. Still not a normal kid appetite, but he IS eating better. I think being around other kids his age at daycare has really helped that along. His teachers say that they are thrilled when he asks for "more" (so are we...).
Thanks for checking on us and being patient with the lack of updates. I noticed one guest book entry said "long time, no update."
Thank you too for your prayers and good wishes.
Love,
Tanys and Randy
Adam and Jeremy
Sunday, October 19, 2003 9:33 AM CDT
HAPPY BIRTHDAY, JEREMY!!!!
Today is Jeremy's 3rd birthday and I know this sounds cliched ... but we are SOOOOO thankful to God!!!! Although, how can it be cliched when everyday in these transplanted kids lives is a miracle? A miracle that God provided by giving the doctors the knowledge and us as parents the courage to go through with it.
Jeremy continues to amaze us everyday. He is learning more and more words. He doesn't say most words very clearly - something I am going to talk to the doctors about when we get to Duke (the week of November 17 - which happens to be Jeremy's transplant anniversary). But he is a wonderful, happy, joyful child with a witty sense of humor. He likes to see just how far he can push things, too - all with a smile and a giggle. Right now, as I am typing, he is opening all of the file cabinet drawers and pulling files out. Wonderful.
He still loves cars, trucks, construction vehicles, planes, trains, helicopters, and especially emergency vehicles - a firetruck or police car going by with sirens blaring is enough to make him stop doing whatever he is doing and listen. We got him pajamas that have fire trucks all over them for his birthday. How fitting is that?
He also loves helping his dad with anything he is doing. Sometimes, as you all with children know, it's not really helping so much as hindering. But we love it. Jeremy also loves following his big brother, Adam, around. Just last night Adam was on the floor and Jeremy was tickling him. Adam, who is 14, seemed amazed that he was pinned on the floor being tickled by his little brother! You should have heard him laughing!
We are extremely grateful to and awed by God and His grace and mercy. Thank You, Jesus, for this wonderful gift.
Love,
Tanys
P.S. Please keep Noah's family in your prayers. Little Noah earned his wings last week. It is so sad. He tried so hard.
Thursday, July 3, 2003 4:20 PM CDT
Hello everyone,
Today is Alex's 16th birthday. I don't know if everybody knows, but Alex was also born with Krabbe and died when he was 13 months old. I am having a hard day today. It always hits me hard, both physically and emotionally.
Jeremy is doing very well. He has finally started to eat consistently. I'm thinking he weighs around 25-26 pounds! He has also started saying more and more words and even putting words together to make two- and three-word sentences. It's so exciting to see this happening! He's a very busy boy, usually going at warp speed, as those who saw him at the symposium can report!
Speaking of the symposium... We had a wonderful time. We so enjoyed seeing all of our "old" friends. It's hard, though, being there, knowing WHY we are all there. Many, many thanks go to the Kelly family for hosting the symposium. We learned so many things from the scientists. Every day brings them one day closer to a cure!
Please continue praying for us. Randy is working on the back porch addition to our house. It's hard work for him. He gets discouraged sometimes because it's hard and it's taking so long to do. I also haven't been able to find a job yet. I've had many interviews - even 2nd interviews - but with so many people out there looking for a job, they always find someone they like better than me - and I'm a GREAT secretary! My unemployment runs out at the end of July, so I need to find something by then. I'm praying for God's leading - what is it exactly I'm supposed to do?
Adam is getting very good on the guitar. He's in a band and is playing in a few "gigs" around town. He's even struck up a friendship with a famous blues guitarist from here in our area - Howard Luedtke. I think that's how it's spelled.
Thank you all so much for checking in with us. I know it's been a while since I've updated. Please continue to pray for all the Krabbe kids - check the links below to read about other children.
Lots of love,
Tanys & Randy
Adam, Jeremy and Angel Alex
(((((xxxxoooo HAPPY BIRTHDAY, ALEX!!! ooooxxxx)))))
Tuesday, March 25, 2003 1:53 PM CST
Hi ... Happy Spring! (Finally)
Jeremy will be having crowns placed on his baby teeth on May 9. Please pray that this will go smoothly for him. The dentist determined that he has hypoplasia, which means that the enamel on his teeth didn't harden. This could be causing some of his eating issues since his teeth could be very sensitive and possibly even hurt. I have talked to two people who said they know children who have had this done and it cleared up their eating problems. We hope it does for Jeremy!
By the way, he gained over a pound and now weighs 21#13 oz. Yey!
Our older son, Adam, was in his first talent show last week, playing electric guitar - the kid's got talent!!
We are looking forward to the Hunter's Hope Symposium in May.
Love,
Tanys & Randy
Adam, Jeremy & Angel Alex
Tuesday, February 25, 2003 4:12 PM CST
Hello. Shame on me for not updating sooner. Look at it this way -- no news is good news! Is that a good enough excuse?
Jeremy is doing absolutely wonderful! We went to Duke for his 2-year post-transplant studies and all the reports were great. I know that Randy wants to tell you all about that, so I will let him.
Jeremy is running around like a typical 2-year-old and usually has the "what can I get into now?" look on his face. He LOVES coloring, especially when we color with him. He still LOVES cars (anything with wheels, really). And he loves tools and tractors and lawnmowers (anything with a motor!) He's going to take after his dad! Urrrr! Urrrr! Urrrr! (Think Tim the Toolman)
I will update more soon. We are still waiting for the 60 Minutess II episode to air (we think it's being pre-empted by the Iraq issue - who knows? - but it WILL be on, we were told).
Thank you so much for checking in on us and praying for us. We appreciate it so very much. You are all wonderful people.
Love,
Tanys & Randy
Angel Alex, Adam & Jeremy
P.S. Make sure you check out the links below to learn more about Krabbes and about other kids!
Wednesday, December 04, 2002 at 09:16 AM (CST)
Hello.
I'm terrible for not updating sooner. I've been so busy. I'm back at work at my old job at Lakeside, temporarily filling in for a maternity leave. I am also waiting to hear from Sacred Heart Hospital about a position there. Please pray! I want that job!
Jeremy is now 2 years old and ON THE GO!!! He doesn't walk anymore -- HE RUNS! And "come here" means "run away from Mommy as fast as I can!" I guess you could say he's my Little Gingerbread Man!
We went to Duke to week of November 18th for his 2-year post-transplant studies. It was wonderful seeing our friends there: Heidi, Kelly, the Kristoff's (Little Ryan was there for his one-year study - he is such a sweetie!), and all the nurses and doctors. It really feels like home there. So far, the results from Jeremy's tests have been very good. We haven't gotten the final results yet, but Dr. Kurtzberg is very happy with how Jeremy is doing. Everyone was so excited to see him.
I have some very sad news: a very special little girl, Chloe, died Monday, December 2. We met her at the Hunter's Hope Symposium in July. She struggled so hard with Krabbe. Pray for her parents as they deal with her passing. It's so hard losing your child. For me, every time one of these precious little Krabbe kids goes on to heaven, it brings back all the memories of our Alex, who died 14 years ago. He would be 15 now. I know that all these kids are together playing, running, laughing - doing all the things that they only got to do for a short time here in their earthly bodies. Can't you just see them? It will be an awesome reunion when we all see them again! Praise God!
Sorry to be so down again, but my Uncle Jim died this past Saturday. Very unexpectedly. Please pray for my Aunt Sandy, their kids and grandkids, and my Dad. They are going to have a rough time with this. I am too. He was really the only uncle I ever knew very well. As my Aunt Sandy said, "I'm going to miss that man!"
Well, on to happier things: Watch 60 Minutes II (the one on Wednesday nights) in January. We were interviewed for the show while we were at Duke for a special they are doing on Dr. Kurtzberg and stem cell transplants. We don't know exactly when it will be on. When we find out, we will let you know. It's pretty exciting all the places and things we've done since the Jer Bear has come into our lives. And he's such a little trooper through it all!
I will update the pictures as soon as I can!
Christmas wishes to all of you. And may God bless you dearly! Thank you for checking up on us!
Love,
Tanys, Randy
Angel Alex, Adam, & Jeremy
P.S. Be sure to check the links below to read about other special kids!
Friday, August 23, 2002 at 01:36 PM (CDT)
Hi.
It's taken me so long to update Jeremy's journal because when we got back from the Hunter's Hope Symposium in July, I just had to sit back and absorb everything that happened. It's taken me this long to know what to say and I still don't know if I'll say it all. I'm sure I'll have more to add and I know Randy wants to write as well.
What can I say about the symposium? It was more than we ever imagined it could be. We walked into this place where there was instant family, instant friends. Friends for a lifetime. I won't even begin to name them because I'm sure I would forget someone, and I don't want to do that. There were many tears, many hugs, many smiles, and so many memories shared. Thank you, Anne, for making that one last call! It was a precious experience. We are already making plans to attend next year.
Since we've been home, we've heard some sad news that a little girl we met there (Brittany) has earned her wings. Pray for her family. This is the father's second child he has lost to Krabbes (he was previously married and they lost their son, who would be 22 years old).
We thank Jim & Jill Kelly SO much for opening their hearts and lives to all of us and sponsoring this symposium. We heard reports from many doctors about research and trials and even the possibility of newborn screening for this awful disease. I know I'm not going to spell his name right, but Augusto Adone the father from Lorenzo's Oil, was there talking about The Myelin Project and his son. It was wonderful to meet him and talk with him. He kissed Jeremy and said he would pay anything to see his son smile like Jeremy. How touching!
It was also nice to see Dr. Kurtzberg and Dr. Escolar from Duke and not in a clinical setting. Just to be there chatting about everyday things. They were amazed by Jeremy. We did get encouragement to check into occupational therapy for him because of some possible mouth sensitivity issues. We did. He does have some issues, which OT has started on - so thank you, Doctors, for leading us in that direction. Jeremy doesn't like what are termed as "slimy foods" like mashed potatoes, pasta, macaroni & cheese, spaghetti-o's, etcs. - UNLESS it's sweet food like pudding, ice cream, etc. Then he'll eat all we can give him. Hmmm - could it be a toddler thing? No, Karen, his OT, said it's definitely a mouth sensitivity and we will get it taken care of.
I don't know if you follow football, but Jim Kelly was inducted into the Football Hall of Fame a few weeks ago. Afterwards, he donated teddy bears to hospital pediatric units. Just this morning, we took a box over to Sacred Heart Hospital and gave bears, the Hunter's Hope newsletter, and a letter from Jim to the children there and left the remainder for the nurses to give out. We had both of our local TV stations and our newspaper there. Amazing! I am anxiously awaiting the news tonight to see it. Randy did an absolutely wonderful job talking about Krabbes, about transplant, and most importantly, about Hunter's Hope to raise awareness. We are going to take more bears to our other area hospitals in the next few days. Their people have been on vacations, so it's been hard to coordinate all of this. I worked with a wonderful lady at Sacred Heart, who coordinated most of it for me - Thank you, Tracy!!!
Also - some good news from me! I had my thyroid biopsied for cancer - and it's not. Thank God!!
Please continue to pray for our financial situation. We are both still unemployed. I have now begun the work search. Randy has been looking for quite a while now. Nothing has opened up.
I know I will think of more things to tell you about. I'll just add them next time.
Love,
Tanys & Randy
Adam & Jeremy
P.S. Be sure to check the links below. There are other kids' web pages to check out and more info about Hunter's Hope and Krabbes Disease.
Sunday, June 30, 2002 at 11:54 PM (CDT)
Hi,
It's been a while since I updated - we have a very busy boy on our hands...
Yesterday, Jeremy decided to call Grandma (we have speed dial). He jabbered for a few seconds, then hung up on her! We didn't know he did this until I talked to Grandma later in the day.
Today... oh, today. Where do I begin?
Let's see - he started the dishwasher (the dishes were already clean); he got through the gate on the stairs - twice - and was heading up them; he tried to make another phone call; I found him sitting on the kitchen table; he kept running down the sidewalk to a very busy street;
enough?
pant, pant, pant!!!!
These are all things he did for the first time today. Wow! We feel so blessed to have this little boy doing such normal things!
Please pray for his continued development, and please pray for us as we head to Buffalo NY this next week for the Hunter's Hope Symposium for Krabbe's kids. It will be a wonderful time!
Love,
Tanys & Randy
Adam & Jeremy
Monday, May 20, 2002 at 07:05 PM (CDT)
Thank you so much for your prayers!!!! Jeremy's surgery went great and he is now hernia-free AND central line-free!!! I can't wait to let him play in the bath tub (just in time for summer too!).
I am trying to upload some new pictures of Jeremy, but the internet is giving me fits, so as soon as it lets me ....
Please pray for these kids with Krabbes, some who have had transplant: Ryan, Gina, Leandra, Julia, Michaela, Michael, Victoria, Brittany, Eden, and Sydney.
There's also a family pregnant with a baby with a fatal disease (I can't remember the name). It too was a missing enzyme disease. I learned this through their friend and told them to contact Duke just in case they can help. This poor family already lost one child. Please pray that they can get the help they need to save their new baby. I have never met them, just heard of them through their friend. Please pray for this family and all the other sick kids.
Have a wonderful spring!!!
Love,
Tanys & Ranyd
Adam & Jeremy
Wednesday, May 08, 2002 at 10:52 AM (CDT)
Hello. I am sorry it's been so long since I've updated. Things have been happening!
First of all, and thank God for all of His blessings, gifts, and mercy -- Jeremy is walking, so we are chasing him around a lot! He has discovered the joys of walking! Yey! Randy and I always remember before we were discharged to go HOME HOME from Duke asking the doctor if Jeremy would ever walk. Their response was they didn't know. Well, he is and we are praising God!
Randy's folks sold their house and moved into an apartment this past month and they are having an auction today to sell everything that wouldn't fit in the apartment. They are in their 80's and were finding it too hard to do the snowblowing and lawn-mowing. I am finding it hard to accept this change, but I know it is for the best. Please pray for their adjustment and for their health.
Adam, our 13-year-old, is in track, but, unfortunately, due to the weather, they have had only 1 out of 7 meets. Poor kid. He's all psyched up to run... so he rollerblades instead, which really worries me because he does all those goofy tricks that you see on TV. I just know he's going to break his leg! Please pray for his safety.
A job still hasn't opened up for Randy. I'm trusting that this is all in God's timing and He will provide for us since Randy has a HUGE HUGE project to do this summer on our house and God knows that he would never be able to get it done if he was working a full time job. Please pray for us, that we will be provided for and that a job will eventually come around for Randy.
I have been kicking around in my head the idea of going back to school to become a nurse. Now, the amazing thing about that statement is that from the time I was a little girl, I knew that there was NO WAY I would ever want to be a nurse (my mom was a nurse and I saw all the stuff she put up with). Now, why am I thinking of doing this, you ask? Well, I have taken care of two of our children with medical needs. PLUS, there is a nursing shortage, so I could always find a job. Please pray for me in this area. I don't know if I'm just day dreaming or what. I do know that I am a good secretary, so why change? I don't know. Please pray.
My dad is coming for a visit in about a month. He lives in Coloroda, so it will be good to see him again. My brother and his family are coming up from Milwaukee this weekend. It will be good to see them, too.
Jeremy will be having surgery this next Wednesday to repair a hernia and to remove his central line. I am both apprehensive and excited about having his line removed. It means fun bath times again for Jeremy to splash and kick and roll around on his tummy in the tub, but it also means no more easy access. So please pray that the surgery goes well and that there won't be a need for "easy access" any longer - that he'll be just a regular kid with regular doctor visits. That would be so wonderful.
Well, I gotta go - Jeremy just discovered his collectible car and has dragged it off a shelf. Yes, I know it's HIS car, but it is a collectible and not meant to be played with - so I better go get it and entertain him. I have been on this computer long enough.
Thank you so much for your prayers for us and especially Jeremy. I ask you, too, to pray for the children who are at Duke receiving transplant, and for those whose diseases are too far progressed to receive transplant. We know the awful outcome for these children. Please pray especially hard for them and their families.
God bless you!
Love,
Tanys & Randy
Adam & Jeremy
Monday, March 18, 2002 at 12:47 PM (CST)
Hello.
We have had a very hectic week. Jeremy was admitted to the hospital late, late Tuesday night with a fever of 103.7. In a "normal" child, that wouldn't have been such a big deal, but because Jeremy still has a central line, they had to rule out an infection in the line.
Thank God, no infection, but a whopping case of rotovirus. Believe me, he was one miserable little boy.
We got discharged Friday evening because he seemed to be doing well - he was eating and drinking and hadn't thrown up since the day before. Well.....
Friday night and all day Saturday he seemed to go backward. We were wondering if we should take him back, but a call to the doctor assured us that as long as he was drinking ...
By Sunday afternoon, he was showing some interest in eating and was actually playing and crawling around. All he had been doing was laying on the floor on a blanket and sleeping on and off - in between Mommy and Daddy holding him - sometimes he just preferred to lay on the floor. Maybe we jostled him too much.
Today, he is doing much better. He even ate a little bit of toast this morning! Thank you all so much for your prayers for this little guy!
Love,
Tanys
Monday February 11, 2002 12:39 AM CST
Jeremy took his first step today!!! It was a small one, but it was a step!! AND I happened to have the video camera running because Dr. Kurtzberg wants a few minutes of what he can do and he took a step WHILE I WAS FILMING!!! How often does that happen? Praise God for this "giant leap" for our little boy.
Jeremy has let me know in no uncertain terms that he's no longer a baby. He doesn't want me to break up his food in little bite-sized pieces any more. He'll take the whole thing thank you! He still won't eat with a spoon. That's still a drumstick. It gets very noisy at mealtime.
Please pray for my sister, Nicole, and her husband Dean. He is leaving for the war today and won't be back for at least 6 months. They have two little boys (ages 1 and almost 3) who will miss their daddy very much.
Adam has started a paper route. He likes it very much and is glad to have his own spending money. The only thing he doesn't like is having to get up early on the weekend! (Just how many people actually read the paper THAT early on the weekend anyway, he wonders.)
No job has opened up for Randy yet, but he's using the time to get many, many projects done on and around the house that really needed to get done. I am working 4-6 hours a week as an office assistant/general all-around helper for a friend of mine. I'm loving it. The hours will increase over time, so I'm gradually getting used to being out of the house (and sometimes being away from Jeremy). I get to take Jeremy with me if I need to, so it works out great! Please pray that Randy, in God's time, will find a wonderful job and that I will be able to stay working with my friend, B.J. Thanks!
Jeremy is such a joy. He loves the Baby Mozart video and laughs at the different things on the TV. He's discovered that if he pulls his shirt up over his face, he can play peek-a-boo really easy. He loves music and will dance to any that he hears, especially Baby Mozart and Sesame Street.
We are very thankful that his platelet count has stayed where it should, and all of his other labs have been pretty normal, as well. We are still going to the doctor every other week, with weekly lab tests, but hopefully we'll be able to taper off in a while.
Once, again, thank you so much for your prayers this past almost 16 months. Yes, Jeremy will be 16 months old on February 19th. Amazing! Please continue to keep us in your prayers.
Lots of Love,
Tanys & Randy
Adam & Jeremy
Sunday, January 13, 2002 at 05:21 PM (CST)
Hello. Shame on me for not updating sooner than I have. But -- I have been VERY VERY busy.
First, my dad came to visit for two weeks right before Christmas. It was so great seeing him. He lives in Colorado and we hadn't seen him for at least 3 years. We had a wonderful Christmas celebration on the 16th with both my brother and sister and their families, and of course, watched the Packers that afternoon. Unfortunately, they lost - but they beat the 49ers today in the playoffs!
Another big thing that happened was Randy's dad had surgery a week ago to clear a carotid artery. He had the first surgery while we were in Durharm in November. Thank You, Jesus, that he came through the second surgery with no trouble. He's home and doing OK.
Guess where I found Jeremy the other day? On the second step FROM THE TOP of our stairs!! Yes!! This was after he had moved a big, heavy Rubbermaid tote out of the way of the stairs first. Now, the tote and the wooden rocker are lodged in front of the stairs whenever we don't want him mountain-climbing. He gets very upset with us about this. And even more upset if we haven't put these road blocks in place before he finds the stairs and starts up them and we have to take him back down. How dare we! I thank God for him, for this healing. It's so wonderful to watch him play and dance to music.
Jeremy has officially had his first cold. It wasn't that big of a cold - just a runny nose (I had to follow him around with a tissue). It got to the point where everytime he sneezed, he would look at me to see if I was coming at him with a Kleenex. He's so cute.
He's not walking yet, but Jeremy is "making strides" forward. He can stand on his own for about 1-2 seconds. He doesn't feel very secure doing this yet, though, and would rather hold on to something, thank you very much. He is also throwing a ball now and plays catch with us. He sometimes get so excited that he follows the ball after he throws it to us, giggling all the way.
I pray that all of you have a blessed New Year. We are very thankful for the blessings we have received. Please pray for some dear people - Ryan (transplanted for Krabbes and is in hospital now with pneumonia), Melina (couldn't be transplanted because Krabbes was too far advanced and had to be sent home), Michaela (new baby born in December. She just received transplant at Duke), Gina (transplanted almost 2 years ago and is doing very, very well). Check www.krabbes.com for more kids with Krabbes.
Thank you all for checking in on us. We appreciate so much your prayers!!
Love,
Tanys & Randy
Adam & Jeremy
Saturday, November 17, 2001 at 02:57 PM (CST)
Jeremy is ONE YEAR out of transplant today! We praise God for this miracle in our lives! Thank You, Jesus.
We are back from Duke. It was so wonderful seeing our friends again... Heidi (Jeremy's Best Buddy) - she played with Jeremy and got a kick out of his smiles; Maggie (Jeremy's primary nurse while in the hospital) - she came to our hotel to visit; we went to the unit to see more of the nurses and CNA's. It was great to see all of the familiar faces - Mary, Kari, Trish, Kathrine, Jamie, Stacey... and many, many others. It was also wonderful to see Dr. Kurtzberg again, as well as all the other doctors.
We also saw Kelly again and had dinner at her house on Friday night with Stacy and Leandra, Lilliana and daughter Milena, and Bill and Pam and son Ryan. Leandra was transplanted 2½ months ago and is doing well. Please pray for her as well as for Milena and Ryan. They are both babies with Krabbes who will be transplanted very soon.
The days of testing were very hectic and draining. Jeremy was a trooper through it all, even when we got bumped from our 9:30 AM surgery slot due to an emergency. He had to wait until 1:00 PM for surgery to place a port and remove his central line. Unfortunately, there were no more places to place a port, so he still has a central line. Thank God the surgeon didn't remove the central line before trying to place a port! Jeremy is such a hard little guy to try to get an IV and we still need to be careful about his platelet counts, which have been wonderful so far!
The test results we've seen so far have indicated that Jeremy has improved and is either near normal or normal. We are waiting for a few tests results to come back. We are extremely thankful for these outcomes!
We also survived Washington DC. It was fun going back there too and seeing all the monuments and memorials. We were walking by the White House and a police officer said we had to go behind the barrier because President Bush was leaving. Of course, we stayed for a while to see if we could see him. We'd like to think that we did, but who knows? We also drove by the Pentagon. The pictures on TV don't portray how devastating it really is. I burst into tears when I saw the damage. It was so overwhelming all I could do was cry. The damaged area is SO big and the road we were on is SO close to the Pentagon - only about 200 or so yards away - that the plane had to literally skim the cars that were driving by. All I could think of was how could any human being have so much hate for others that they would do this? I also couldn't help but think that if it was this bad at the Pentagon, what must it be like in New York? I couldn't imagine.
Jeremy just woke up from a nap and is being clingy, so I'd better go.
Love,
Tanys & Randy
Adam & Jeremy
God Bless America!
Tuesday, October 30, 2001 at 08:09 AM (CST)
Good morning! Yes, it's MORNING! Jeremy has decided to change his sleep pattern - in a span of two days and over the time change, no less. He used to sleep until 9-9:30 AM (after going to bed at 10:30-11 PM). On Saturday, he woke up at 8:00 AM, so that night I put him to bed a little later because I didn't want him up at 7:00 AM due to the time change. Guess what? He was up at 7:00 AM and has been every day since. Yey. And not just "awake" either - ON THE GO! I am usually still bleary-eyed.
His birthday party was fun. It was a hectic day, though! We were pouring cement for our driveway that morning. (It was supposed to happen the weekend before. It poured all right - RAIN - not cement!) So, it was cement at 9:30 AM (Randy, his brothers, Doug and Dave, Adam, and me were spreading and smoothing), then my brother and his family showed up at 1:30 PM from Milwaukee (the cement still wasn't done). The party was supposed to be at 1:00. I tell you, the day was chaos! But it all turned out and Jeremy had a blast with his cake. My mom would have been proud! She always loved it when kids dug in and got really, really messy with their birthday cake. I think Jeremy lived up to her expectations! I will update the pictures as soon as they are developed.
We are leaving for Duke on Saturday morning (Nov. 3rd). Please pray for our safety while driving out there. Jeremy will be going through many, many tests, so please pray for his (and our) endurance and his safety. These tests will tell us exactly how he is doing transplant- and disease-wise. We can tell that he is doing very well, but we need to see how his brain is developing and if there are any underlying problems. Please pray for great outcomes!
Jeremy's platelet count seems to be steady and he is being weaned off the prelone. Thanks for your prayers during this time. He will need more prayers that his counts stay normal as he comes off the steroid.
And life continues on our rollercoaster ride. Once again, we are plummeting down a steep hill. Randy was laid off from his job. On a positive note, it's just in time for our trip from Duke, so he won't have to lose time or take days off, but on a negative note ... well, you know the ramifications of NO MONEY! Please pray that in this bad economy, with EVERYBODY searching for a new job, that Randy will find something. I plan on going back to work in January. (I got my previous job back as administrative assistant - yey!) But that's still two months away. Please, please pray.
Another prayer request: Our good friends, J & K's dad died (his dad, her father-in-law) this week. Losing a parent is so hard. It's like losing your cornerstone. I know. My mom died 6½ years ago.
Jeremy has learned to wave hello and goodbye. It's so cute! He sits on the living room floor and waves hello at us. I love it! He's also getting steadier on his feet. He only walks around furniture yet and still hasn't given any indication of letting go and standing on his own, but I can imagine it won't be long and he will be walking.
One last thing before I sign off - We will be going to Washington DC after our time at Durham. We thought it would be good to let Adam see the city - it's beauty, it's reverence. I AM ASKING FOR YOUR PRAYERS AS WE HEAD INTO THIS AREA, ESPECIALLY AFTER HEARING THE FBI ALERT THAT THERE IS THE POSSIBILITY OF AN IMINENT ATTACK IN THE NEXT COUPLE WEEKS. Needless to say, I am very scared, but we don't want to pass up this opportunity to let Adam see a wonderful part of our great USA.
Thank you so much!
Love,
Tanys & Randy
Adam & Jeremy
God bless you!
Monday, October 15, 2001 at 01:21 AM (CDT)
Hi, it's been a while since I updated. Jeremy is doing very well. His platelet count has gone up into the normal range and has remained stable, so he is slowly being weaned off the prelone. Please pray that his counts stay where they should be.
Jeremy will be 1 year old next Friday (the 19th). How very exciting! You should see all the things he can do. He is amazing us with new things he seems to learn every day! He pulls himself to a stand and walks around the furniture. He has learned patty-cake and "so big" and also rolls a ball to us. He also will play peek-a-boo with us. And our favorite ... he says mama and dada!
He is also being a typical little one in that he gets into EVERYTHING!!! And EVERYTHING goes into his mouth!!! (He's my little human vacuum.) I have to monitor the floor all the time and sometimes I have to put a big box in the hallway so that he stays in the living room area - the cat food is in the kitchen - he loves to scoop that ALL OVER THE FLOOR! We also have to keep the bathroom door closed because he has discovered toilet paper.
All normal baby things and we are very happy that Jeremy is doing them. He's very observant. Sometimes I watch him and I can just see those wheels turning as he's trying to figure something out. (I will translate for him, "Hey, that looks easy! I can do that!")
Just tonight, I was watching him play and I offered thanks to God for healing our little boy. What a blessing he is in our lives. Our older son, Adam, thinks he's pretty neat, too, and will play with him and try to get him to laugh - an easy task since Jeremy thinks Adam's pretty cool too! He watches everything Adam does.
We are getting ready to go back to Duke in November for Jeremy's year studies. We are excited about returning. I never thought I would want to go back. I remember thinking when we left Duke in March that I never want to leave home again and ESPECIALLY not to go back to Duke. Now, I am looking forward to seeing all the friends we made and sharing our experience with Adam. I feel differently about it now because I know our baby is fine.
When we leave Durham, we are planning on traveling up to Washington DC to show Adam the city. He has never been there (Randy and I went about 12 years ago) and we thought it would be a good experience for him. Please pray for our safety while there, in light of the terrible things that have been happening.
I must go now, since it is so late. Thank you so much for your continued prayers. Please keep praying about Jeremy's health and our trip.
Love,
Tanys
Wednesday, September 19, 2001 at 11:00 PM (CDT)
Hello.
I have to make this very short, even though it's a long story...
Jeremy's platelets are still giving him problems, so on September 4th, a PICC line was placed in his arm. By that Friday, he had developed a fever of 102-103 and was admitted to the hospital for a week of antibiotics because the line got infected. He was discharged the following Thursday.
On Monday, the 17th, we had an appointment for a checkup in Minneapolis. We were expecting to go back home, but his platelets were down to 12,000 (normal is >140,000), so they admitted him to the U of MN Medical Center. Because he has been poked SO MANY TIMES for IV's (which the last two times took 7-8 tries), they placed another central line on Tuesday so he can receive IVIG and give blood samples with no more pokes.
It's Wednesday night and we just got home. By the way, today is Jeremy's 11-month birthday and he is 10 months out of transplant.
Please pray that his line doesn't become infected and that the ITP will resolve. He is also on a steroid to help to clear it up.
Thank you so much for your support! Gotta go now - he wants Mommy.
Love,
Tanys
Tuesday, August 28, 2001 at 12:06 AM (CDT)
As I'm sitting here, I guess I don't even know where to begin, so I'll just start - here goes....
About 2 or 3 weeks ago, amidst all the excitement of President Bush's decision on stem cell research, I happened to be up very early on a Monday morning watching the Today Show. I was taken completely by surprise to see Dr. Kurtzberg, one of Jeremy's doctors at Duke, being interviewed about cord blood stem cells, the kind used in Jeremy's transplant.
In response to that interview, and I'm still not quite sure exactly how it all happened, but our local news channel got Jeremy's name and wanted to interview us about the transplant. I took it as an excellent opportunity to let others know about cord blood transplants, about Krabbe's Disease, and about donating cord blood. The interview turned out great, and as soon as I can figure out how, I am going to link it on Jeremy's page. Jeremy was SO cute! Just being his little ol' self!
Well, the interview aired on Sunday night. Over that weekend, I had noticed some bruising on Jeremy's legs and wondered how they had happened since he isn't crawling yet. I just thought I would keep my eye on them. Then, on Tuesday, I noticed some teeny tiny spots on his legs. I was somewhat alarmed about this and decided to call the doctor on Wednesday if they hadn't gone away.
By Wednesday, the spots were all over his little body, so I called the doctor. She told me to bring him in on Thursday just to be sure. I did, they checked his blood chemistries and his platelets had dropped to 25,000 (normal is above 140,000). !!!!! Alarms were ringing in my head! She had me bring him in on Friday just to see if this was a downward trend - most likely not - but just in case. On Friday, they had dropped to 6,000. Now, I am starting to panic. She called our doctor in Minneapolis, who said to get him there to Fairview University Medical Center (at the U of Minnesota) right away.
We did. We were given a few ideas of what could possibly be wrong, one being ITP, a virus that causes antibodies to attack the platelets. This was what we were hoping (yes, hoping) was what was wrong, since the other alternatives were very scary, without happy outcomes. They gave him a transfusion of platelets on Friday evening to see if the count would go up or down. If they went up, then why did they drop in the first place? If they went down again, then we knew the answer.
One hour after the transfusion (which ended about 1:00 AM), they drew a lab and the platelets came back (we had to wait until later Saturday morning) we found out that they were up to 90,000 or so. Still not high enough to be normal, but the doctors were expecting them to be much lower if this was ITP. Randy and I were VERY scared, since that meant something more serious could be wrong. I was devastated. I just couldn't handle ANYMORE since I had been worrying since Monday night. I felt like I was an emotional wreck.
They drew another lab at 1:30 PM Saturday (after it had been scheduled for 12:00 PM) and said that it would be back within a half hour. Wait, wait, wait. This was one of the most critical times for us, for this count would tell us which way things were going. Finally, after 3-4 hours (!) the labs came back - the platelets had dropped. The doctor said he had never seen anyone be so happy about a low platelet count before. We were happy with that news because the alternatives were much worse.
Jeremy received two doses of IV antibiotics and a dose of his old "friend" IVIG - something he received every Tuesday while at Duke. Through all this, he was such a little trooper. He charmed all the nurses and even those mean people who came and poked holes in him at all hours of the day and night (remember, his central line was removed in May). He played with his toys and even got to ride a little John Deere trike around his room. His nurse found a gym mat and put it on the floor so that he could roll around on the floor since he was getting bored in the crib. And, we even "convinced" him to wear a mask so that he could go play in the infant/toddler play room. He loved it!!
He was discharged home on Monday, with his platelet count steadily climbing higher. We have to go to the doctor twice a week for a couple of weeks and then once a week for a while after that. The doctors said that if Jeremy would have been a "normal" kid (meaning: not had a bone marrow transplant), he would have been treated with antibiotics and IVIG and sent on his merry little way without much fussing, but because he's had the BMT, they had to rule out other things, such as the transplant failing, leukemia, etc. (See why we were so scared?)
They also said that they had never seen a kid get ITP after a BMT. Our Jeremy had to be the first.
That was our very exciting week - yes all that I typed happened in ONE week. To say that we are exhausted is an understatement. So, you might ask, why am I typing this at 12:30 AM? Because our little Jeremy is still the little night owl that he always has been and stayed up until 11:30 PM tonight.
To those of you who might have known what was going on (we didn't have any access to a computer to let you know what was happening) and to those who just might have felt an urge to pray, for whatever reason - THANK YOU FOR YOUR PRAYERS!!!! God answered ours in a HUGE way and performed another miracle in our lives.
Good night. I'm going to bed.
Love,
Tanys
Friday, August 10, 2001 at 12:36 AM (CDT)
I realize it's been almost a month since I've updated. Time flies so fast!
Jeremy's doctor's visit in Minneapolis went very well. He didn't quite make it to 16 pounds - he was 15 pounds 6 ounces. (I bet he's close to 16 now, though!) Dr. Peters has put Jeremy on a monthly doctor visit schedule here at home and he will let us know when we have to go back to see him. Dr. Peters is working on the year studies. We don't know if we will be able to get back to Duke in November, since Randy got this new job. November is their extremely busy time of year and NOBODY gets off then. We'll have to see what happens, but we will definitely let you know!
Jeremy is now rolling over in both directions (right and left), as well as from tummy to back and back to tummy. His arms no longer get stuck - he just flips over likes he's been doing it since day one! He thinks it's a great game to roll over and kick his legs and squeal (spelling?) when he's SUPPOSED to be going to sleep! He's a night-owl, but thank goodness for Mom, he sleeps in until 9:00 AM. Whew!!
Jeremy really likes going for walks. I try to take him every evening. He just sits in his stroller and watches everything. We usually go down to the library and have to cross a bridge to get there. He just watches the water and the cars go by. He absolutely loves being outside. Even in the terrible heat and humidity we just had for the past three or so weeks. It finally cooled off tonight - windows are open and no air conditioning. I love it that way!
Jeremy went on his first road trip that didn't end in a doctor's appointment this past weekend. We took Adam down to Milwaukee to spend a couple weeks with my brother, Rob, and his family. They will bring him back in a couple weeks and spend a couple days here with us. It was a good trip. Very relaxing. Jeremy is such a good little traveler. We just have to learn to try and not be on the road after 8:00 PM because that's when he gets fussy. (He let us know he had HAD IT with that car seat!) I miss Adam, but he must be having a blast because we haven't heard a word from him!
I am really enjoying being at home and taking care of the house and family. I do miss working outside of the home, but I feel I am much more relaxed and focused by being home. We'll see what God has in store for me in the future. My boss called me and offered me a position when I can come back. I feel very honored that they want me back. We'll see what happens, though. Right now, I'm in no hurry to get back, especially with Jeremy's delicate immune system.
I'll try to fix the other two pictures in the photo album. I don't know what happened, but when I get them fixed, I'll let you know.
I can't say enough how much we appreciate your checking in, praying for us, and offering words of encouragement to us. I hope that we can be of help to others like you have been to us.
Gotta go,
Love,
Tanys
P.S. Please pray that we will be able to go to the Hunter's Hope symposium next year. I am really anxious to go!
Sunday, July 15, 2001 at 11:57 PM (CDT)
Hello, again. It's very late and Jeremy's asleep, so all typing errors will be all mine.
Randy survived his first week at work. He installed air conditioners all week and was out in the hot sun all every day. This next week will be even hotter and more humid. Please pray for his endurance and safety. Please also pray for encouragement for him.
Randy's folks celebrated their 65th anniversary on July 8th. They are such a blessing and ones to look up to in these days of marriages not lasting. Please pray for their continued good health.
Jeremy is doing very well. He is rolling over onto his tummy but his arm still stays stuck under him. So he gets frustrated and rolls back over onto his back. He also tries so hard to reach something that is a foot or two away from him on the floor that he's fallen on his face a couple of times. The physical therapist says that's OK. I don't know - I wouldn't want to fall flat on my face! (I've done that enough times, figuratively speaking!) We go back to the doctor tomorrow -- after a three week break! Then next week to Minneapolis to see Dr. Peters. Please pray for Jeremy's continued good health. The last time he was at the doctors (on June 28th), his RBC was 11.4! Yey!!! He also weighed 14 pounds 6 ounces. He has been eating so much that I'm thinking he might weigh close to 16 pounds. I'll let you know if I'm right the next time I update.
Our other son, Adam, has been staying at grandma and grandpa's keeping his 11-year-old cousin from California company until he leaves on Tuesday. Adam will be going into the 7th grade in a little over a month. That's hard to believe. My boy is growing up! Please pray for him as he enters these hard, but fun years of life.
I often think back on those days we spent in Durham, in the hospital, and at the clinic when we were outpatient. I thank God for leading us there, for I know that without the transplant, we wouldn't be excited about Jeremy's progress. We would be mourning his illness. I don't even think of what things could have been like. I just focus on the future and Jeremy's good health and growth. He's such a happy baby. Please, please pray for his continued good health and strength.
Thank you so much for checking in on us. It really is a comfort to know that so many people are praying for us.
Lots of love,
Tanys & Randy
Adam & Jeremy
Saturday, July 07, 2001 at 10:37 AM (CDT)
Hello again!
I'm so sorry that we don't update as often as we should. Busy, busy, busy! And the computer isn't always free when I am!
Jeremy is doing very well. He's still sleeping this morning. I need to go check on him very soon. He must have been tired!
The last time he went to the doctor was June 28. He has another appointment on the 16th. That will be three weeks between seeing the doctornn. That's the longest this little boy has gone! sDP PrAISE GOD!
oK. jEREMY IS UP NOW AND HELPING ME TYPE!!! He hit the caps keyv. 111
I guess I'll have to keep this short and sweet.
Randy got a jobg . hE STARTS THE 9TH (mONDAY). He will be installinG sheet metAl. The Lord's timing!!! Randy JSUT finished thejfv garage he started last summer before sd JEremy was born.
Gotta go, Jeremy's hungry and helping me type too many words. Can you tell?
Love,
Tanys & Randy
Adam & Jeremy
Sunday, June 24, 2001 at 07:03 PM (CDT)
I am sitting here thinking of the many blessings God has given us. I'll try to tell them to you.
First, of course, is Jeremy. He is 8 months old, 7 months out of transplant, and completely off cyclosporine, which was preventing graft vs. host disease and suppressing his immune system. I can't hold him and type anymore because he likes to type, too, and I end up with words like a.skdjfpr9t and otrieja;th. The only thing is that when he sees me typing, he must type too, so he fusses, which is what he's doing now. So I'll pick him up. We'll see what we get.
Second, is Randy's job hunting. He went to apply at a company last week and ended up interviewing with the president of the company. He has a 50/50 chance of getting the job, which they will decide on Wednesday.
Third blessing is Randy's folks. They have helped us out so much over the years, first with Alex (our first son, who died from Krabbe's), then our second son, Adam (they watched him while we were at Duke), all the everyday stuff of life, and now with Jeremy. They will be celebrating their 65th wedding anniversary on July 8th. All the relatives, all the way from California, Florida, Indiana, South Carolina ... will be coming to help celebrate.z
ft THAT'S JEREMY. HE ALSO HIT THE CAPS KEY. He's getting extremely fussy (meaning, tired) right now, so I will probably have to cut this short.
I would like to list many more, but d I'll have to go.
Love,
Tanys
PS. the typos might be mine, and they might be Jeremy's.
Sunday, June 24, 2001 at 06:50 PM (CDT)
I am sitting here thinking of the many blessings God has given us. I'll try to tell them to you.
First, of course, is Jeremy. He is 8 months old, 7 months out of transplant, and completely off cyclosporine, which was preventing graft vs. host disease and suppressing his immune system. I can't hold him and type anymore because he likes to type, too, and I end up with words like a.skdjfpr9t and otrieja;th. The only thing is that when he sees me typing, he must type too, so he fusses, which is what he's doing now. So I'll pick him up. We'll see what we get.
Second, is Randy's job hunting. He went to apply at a company last week and ended up interviewing with the president of the company. He has a 50/50 chance of getting the job, which they will decide on Wednesday.
Third blessing is Randy's folks. They have helped us out so much over the years, first with Alex (our first son, who died from Krabbe's), then our second son, Adam (they watched him while we were at Duke), all the everyday stuff of life, and now with Jeremy. They will be celebrating their 65th wedding anniversary on July 8th. All the relatives, all the way from California to Florida will be coming to help celebrate.z
ft THAT'S JEREMY. HE ALSO HIT THE CAPS KEY. He's getting extremely fussy (meaning, tired) right now, so I will probably have to cut this short.
I would like to list many more, but d I'll have to go.
Love,
Tanys
PS. the typos might be mine, and they might be Jeremy's.
Thursday, June 07, 2001 at 12:52 PM (CDT)
Hello again. Yes, it has taken a while to update again. Excuses, excuses.
Jeremy is doing absolutely great! We told you his lines were out. That has made life so easy! I still thank God that it went so well. Jeremy weighs 13 pounds 10 ounces now. He's getting big! He's also sitting up on his own and has two teeth. A therapist comes in once a week to work with him. He still isn't rolling over yet, but give him time!
He had a very active Sunday last weekend. We went to the Eleva Broiler Fest parade - something that Randy and I have been doing since we were dating (in other words, for 16-17 years). We didn't want to miss this year so we got the OK from the doctor as long as we kept him out of the sun and away from people - no problem! He loved it! So much stuff to see!
More good news - his RBC is 11 - on its own! He hasn't needed a transfusion since he's been home. We thought for sure he would need one, but he pulled through on his own, thank You, Jesus!
Randy is still looking for a job. Please pray, as hard as you can, for a good-paying, safe job for him. We are both out of work (me because I'm taking care of Jeremy) and we might not have insurance for Randy, Adam, and me.
Thank you all for checking in - you are a real blessing. I love checking to see what you wrote to us.
Check the photos - I added the article we were featured in on Mother's Day.
Wednesday, May 23, 2001 at 03:21 PM (CDT)
Hello again! (CHECK FOR NEW PICTURES!!!)
Great news! Jeremy's central line was removed on Monday and he's doing great! We had a very long day, but we came home with a happy baby and a very happy mom (no lines to flush or worry about)! Thank You, Jesus, for bringing him safely through surgery.
While we were in the surgical waiting room, a lady came up to me and asked if I was from Eau Claire -!- (we were at thu U of Minnesota Hospital). It turns out that she recognized us from the newspaper article we were featured in on Mother's Day. I'm trying to figure out how to scan it so it can be readable on this site. We'll see. Please pray for the lady we met at the hospital - her daughter was having surgery for cancer.
We have some bad news...Randy was permanently laid off from his job. Now, neither of us are working. We're poor, but we're grateful for all that we have. He's starting to job hunt this week. Please pray. We may not have health insurance, but Jeremy will through medical assistance. We are working on options through Badger Care. Randy has been very discouraged about losing his job, but it gives him time to finish some projects (like his garage).
More news about Jer Bear - he has a tooth and he can sit up on his own. He just turned 7 months old and it's been 6 months since transplant. He weighs 13 pounds, 4 ounces and is very curious about the world around him. We have had therapists come to monitor him to determine what kinds of therapy he needs and they tell us he is only about a month or so behind other babies his age. Isn't that great news!
Adam is doing well - almost finished with the 6th grade. He has grown so much this year and is interested in basketball now.
We are very happy and grateful that Jeremy is doing so well - actually tickled pink. He's a very happy baby. He smiles so quickly and is laughing out loud. He's a flirt with the nurses. Everybody comes to see him when he's in clinic.
We have heard of so many children who have died that were at Duke. It breaks our hearts - some of them we knew. We pray for strength and encouragement for the families. We know what they've been through.
Thank you to Heidi, Jeremy's Best Buddy, and all of the other walkers who walked in the Rainbow Memory walk. They raised quite a bit of money.
We are so thankful for all of you who check on us. Sorry it takes so long for us to update. LOOK FOR THE NEW PICTURES!!!!!!
Saturday, April 28, 2001 at 11:32 PM (CDT)
I've heard from a couple of people in the past few days to UPDATE JEREMY'S WEBSITE!!!! OK! OK! I've just been so busy!
First of all, Jeremy is 6 months old now and we are thanking and praising God that he isn't showing ANY symptoms of Krabbe's. By this time, our first son, Alex, was showing symptoms.
We have great news! We went to Minneapolis on Monday, April 23rd for Jeremy's monthly check-up. He weighed 11 pounds 14 ounces - ALMOST 12 POUNDS!!! They are also scheduling for his central line to be removed at the end of May and he will not have to have a port - that is if everything goes all right between now and then. I, especially, am so excited about his lines being removed because that means no more dressing changes (something I STILL get very nervous about) and no more line flushes. Jeremy hasn't had to have another blood transfusion since we've been home. His last one was March 5 before we left North Carolina. His RBC count dropped to 8.2, but the doctors figure it was because they were drawing too much blood from him, so now he only has labs done once per week. Before he has the lines removed, they are hopefully going to be only once per month, or when they feel it's necessary. THANK YOU, GOD!!!
The doctors are also weaning him off the cyclosporine by mid-June. We are very excited about this since it means his immune system will rebuild much sooner. We do still have to be extremely careful until a year out of transplant. Although, I think we will be quite paranoid for a long time. I would think a lot of people feel paranoid and very nervous about exposing themselves or their children to other people.
We received a very nice message from Jeremy's best buddy, Heidi, from North Carolina. It's in the messages - please read it and pray for the walk that she will be participating in in honor of Jeremy. Also, watch for her balloon!
We had another answer to prayer. I have been working Mondays, Wednesdays, and Fridays from 4-8 PM for a few weeks. Last week, I received notice that I would have to work every other weekend (both Saturday and Sunday from 9:30 AM to 6:00 PM). That would be OK, but Jeremy refuses a bottle. He nurses. No bottle for this baby! So, I prayed and asked for guidance. I also asked God to be pretty blunt since sometimes we (I) can miss the message. Well, the 2x4 came out - Randy came home the next day and said his hours were being switched to permanent 3-11 PM (remember, I've been working 4-8 PM). Wack! I received my message. So, yesterday, I submitted my two-week notice. I have mixed feelings about it since I've been there over 7 years, but the health and well-being of my baby come first.
This next week a reporter from our newspaper is going to come over and do a story on Jeremy - the transplant and the importance of banking cord blood. Please pray that the interview goes very well.
Well, I was planning on writing a lot more but the Jer Bear just woke up (notice the time). Lots of love and hugs to all of you - and thank you from the bottom of our hearts for keeping up with us and especially for your prayers!
Wednesday, April 04, 2001 at 11:21 PM (CDT)
Hello, again. Sorry that it's been so long since we've updated Jeremy's page.
I am SO enjoying being home! So much so that I rarely want to leave. I really enjoy just being home and taking care of my family.
Jeremy is doing VERY WELL!!! He is finally gaining weight and has reached 11 pounds! We were getting a little worried because the doctors were thinking of inserting a feeding tube in his nose for overnight feedings. Now that he is steadily gaining, we won't have to do that. They are also thinking of removing his central line in the next few weeks and placing a port. I would really like that since it would mean no more dressing changes and no more daily line flushes. We go back to Minneapolis in three weeks so we'll see what they have to say.
Jeremy surprised me today. He's rolled over a couple times, but hasn't done it for a couple weeks. This morning, I put him on his tummy on the living room floor and ran into the kitchen to start the dishwasher. When I returned, he was laughing at the ceiling fan! His legs are also getting very strong. We work with him everyday on the "Weeee!" game. We hold him in a standing position, he pushes with his legs, and we lift him above our heads and say "Weeee!" He loves it!! He likes to do it for a VERY long time. Our arms tire out before his legs do.
Therapists are going to come in and evaluate where he needs a little extra help. We feel that anything we can do for him will be to his advantage.
I started back to work on the 30th. It's only for four hours on Mondays, Wednesdays, and Fridays for now. Randy takes care of Jeremy while I'm gone. Please pray for Randy's endurance during these hours - it's five hours by the time I've driven both ways. Jeremy still won't take a bottle, so the time I'm away can get a little crazy. Jeremy eats cereal and fruit twice while I'm gone because he won't drink from a bottle. I guess he knows what's best for him. Randy is doing an excellent job taking care of the little guy. I'm really proud of him. :)
Please keep praying for us as a family and for Jeremy's recovery. His red blood cell count is still dropping. We are hoping that it is because we have had to draw so many labs. Our doctor has decreased the amount so we will see what happens in the next few days. If his count drops any lower, he will need a transfusion. We were really hoping he wouldn't need any more. Please pray that his RBC count increases on its own.
We praise God for His goodness and blessings. Sometimes I could cry when I look at my two boys and see how wonderful they are. And when I think of our son, Alex, who's in heaven (Alex died of Krabbes in 1988), I can't help but think of how neat it would be if he were here too.
Thank you all for your words of encouragement and your prayers. I know you check often and are probably disappointed that we haven't updated. I can't believe how busy I am with just one extra little person in this house!
Take care and have a great day!
Love,
Tanys & Randy
Adam & Jeremy
Tuesday, March 13, 2001 at 11:51 PM (CST)
Hello again. Yes, it is wonderful to be home! Jeremy has had a few rough days adjusting to being here - the two long days in the car didn't help much, and now his family just increased by 100% - a lot for a little guy to get used to!
Today was a much better day, though. We have discovered that he needs at least a two-hour nap in the morning. It's been so long since I've had a baby that I forgot this important activity. He slept all the way to Minneapolis for his doctor appointment and when we got there, he was his happy, normal self! Needless to say, we were thrilled.
The doctor gave a good report. He talked with us for nearly three hours and not once did Jeremy fuss (except to be fed, of course). The doctor said that if Krabbes would be bothering him, he would have been very fussy throughout the whole time. Praise God! We still have to be alert for those signs of disease, but we are being optmistic. Already I have noticed things that Jeremy is doing that Alex never did, for example, sitting up (with my help) with a straight back. Alex could never sit up straight even with my help, and always cried if I tried to sit him up. We continue to pray for more advances for our little Jer Bear.
I can't express enough how thankful I am for this treatment. And I know Randy and the rest of the family feel the same way. The support all you have shown has been amazing and definitely appreciated.
Must go - it's nearly midnight and it's been a long day!
Love,
Tanys, Randy, Adam & Jeremy
Saturday, March 10, 2001 at 07:56 PM (CST)
Hello everyone! Praise God with us as we celebrate being home!
We arrived Thursday evening after a two-day drive. The cold and snow is something I have to get used to!
Jeremy is doing well. It's taking him a few days to unwind from the trip, but otherwise, he is doing great! We had a scare last Monday night, though. He needed a blood transfusion (his RBC was 7.9). but before he could get the transfusion, he had a scheduled MRI and had to be sedated. The combination of both made his temperature drop to 91 degrees. We didn't even realize he was THAT cold, we just thought he was chilled and would warm up by being bundled and held. When we got to the unit to get his transfusion, the nurse took his temp and then ran out of the room. Literally seconds later she came back with doctor. We were pretty scared when they started piling blankets on him and turned the room temp up to 80 degrees! He warmed back up soon after that.
I am very glad to be home. I am trying to get a routine going and a place for all the medical supplies. We will be going to Minneapolis/St. Paul on Monday (the 12th) for a check-up, so pray for good news.
Also, please pray for the four of us as we get used to being a family again. In some ways, it's almost like starting over.
Love,
Tanys, Randy, Adam & Jeremy
PS. My guys were very happy with the steak and mashed potato dinner I cooked for them tonight!
Tuesday, February 20, 2001 at 01:49 PM (CST)
Hello! Long time, no type!
I finally have somewhat regular access to a computer.
I don't remember what day it is. All I know is that Sunday, February 25 is day 100!! Thank You God for Jeremy!
Randy is flying in on March 1 and we will be starting for the two-day drive home on March 6. I am getting very excited about going home. "Excited" is a mild word, though. I am FRANTIC about going home! I haven't seen Adam since November 1, 2000. I miss him so much. Randy says he's grown bigger - I might be intimidated. Nah! He's my boy! And, as he would say back to me (and be embarrassed that I'm telling this), "My Mommy."
Jeremy is doing very well. He is doing most of the things a 4-month-old should do. I think he will be late on rolling over, though, which is OK. He'll stay put a little longer. He is reaching for his toys and noticing his hands (What is that thing in front of my face?). He also loves to just watch me talk to him. He is starting to make noises back at me, which is a thrill. He is such a joy! I can't express enough how grateful I am to God for this little boy and that he is going to be OK.
We have to be very careful with Jeremy. He can't be exposed to anybody who is sick or has had vaccinations, or been exposed to anyone who's been sick or had vaccines. We also have to keep the house SPOTLESS. It will help that I will only be working part time until Jeremy can go to daycare.
Speaking of work, please pray for Randy's work situation. He is on his third shift change in a week. The plant might even end up shutting down.
Jeremy is getting very fussy right now and we are in the Ronald McDonald House's front office, so I better sign off.
Thank you all for your prayers and your support. I love seeing your notes.
God bless! (And see you at home in a little over a week!). Please pray for Randy's safe flight and for safe traveling for us.
Love,
Tanys and Jeremy
Monday, January 29, 2001 at 06:07 PM (CST)
Hello all,
this is Randy back in Wisconsin. Tanys has had trouble accessing a computer lately so I'll try and update you on what I know.
Jeremy is battling this CMV virus, its being a little stubborn and they have given him new medicine to fight it. Please pray that it will be gone soon and that the medicine doesnt damage his kidneys or liver.
Jeremy is still getting red blood cell transfusions about once a week, the medicines he's on suppresses his bone marrow a little and hopefully soon he won't need any more.
They are adjusting his blood pressure medicine a little also, it still is to high for a little baby.
Tanys is very anxious to come home, she has not seen Adam for 3 months now and still has a month to go. Please encourage her.
I have been very frustrated since I came home also. Many things are happening at one time and most of them are bad. It seems like there is never enogh time to deal with all this. Here is my list of headaches lately.
-I am constantly battling insurance and payment issues. These companies are being really stupid and it seems like I have to spend at least an hour a day reminding them to do their job. How many times can I remind them that yes we have insurance and yes Jeremy is on Medicaid.
-Duke University has been stupid at times also. Same issues as I listed above and some others. I cant believe how inefficent and how much time is wasted sorting out these problems. Their is so much red tape involved. I even received numerous bills that werent even sealed.
Please pray for me that I will be patient and that I don't get to discouraged.
-The place I worked has layed off 60 people and there business has dropped about 80% from last year. I'm not sure if any more will be layed off or if they will even remain in business. In February we will be going from 4 shifts down to 2 shifts. They say it will pick up again but I am pessemistic about it. I also will be going onto 5 days a week 8 hours a day from the current 12 hour 3 or 4 days a week. I will really miss having 3 or 4 days off a week and also not getting any more overtime. I really hate getting up in the morning and I will probably be on staight dayshift. Many people would like that but I dont. I need a few days off to recuperate from work and to work on all my remodeling projects etc. After Jeremy is back I will be able to watch him in the evening while Tanys is at work.
-Too many bills and not enough income. Tanys will be part time the rest of the year and all of our costs are going up. I live in fear of my next electricity/gas bill. Ours was the highest ever in December and we werent even there half the month.
-I'm trying to get some kind of a doctor/ clinic routine established for Jeremy before he comes home, but it's very confusing when you get insurance involved. We will probably be going to a clinic in St Paul Minnesota, because that is the closest Pediatric Onocologist available. We also have to set up a home health agency and get a Pediatrition that is close to home in case of emergency. I wish Duke University would try a little harder and help make some arrangements soon.
-I am trying to add some heat ducts to make our upstairs warmer, its to cold without electric heat. I need to be done before he comes home in March.
-Before Jeremy was diagnosed with Krabbes disease, I had torn down our old garage and put up a new three car garage. I did all the work myself with a little help from some friends. I even rented a bobcat and brought in two truckloads of dirt. All I had left to do was put on siding when Tanys came around the corner one day and from the look on her face I knew something terrible had happened (this was in October of last fall) Jeremy had Krabbes diease. Oh God how that hurt. We did not know of any cures and I knew it would mean that Jeremy would suffer and die. I completelty forgot about my garage and balled for three days. Then we learned from Dr Beiging that there was a risky procedure at Duke University that had some hope. We spent a couple hours on the phone with Dr Kurtsberg finding out about the stem cell transplant program and then with the insurance company to find out if they would even pay for it. It would be expensive, about a half million dollars or more and there was no guarntees. Better than a 50% chance that Jeremy would survive the procedure and live. He would be the 5th baby in his age group to have the transplant. We also talked to Ann Rugari who has a little girl that had the same disease and is now a year old and is doing wonderfull. We were so encouraged talking to her and have received so much help from so many wonderfull people:
I was so touched by the love and respect I received from the people at American Phoenix, and from the people at Valley Brook church and from many people on the internet through Jeremys web page, and from many others I wish I could list them all.
-You know its kind of funny but as I look back at what I've just written, I see how God has worked in my life.
He has taken the focus from all the problems we have (and we have many)and changed it to the wonderfull things that he has done for us. And I need to remind myself that God is not finished with us yet, and that he is not finished with Jeremy either. So with tearfull eyes, I say ........."Thank You".
Randy
PS. I still need to finish my garage but I think I'll wait till its warmer.
Thursday, January 25, 2001 at 01:54 PM (CST)
Hello! Today is Day 69. Praise God!
Jeremy is doing very well. He still has high blood pressure problems, but they are getting that under control with medications, plus, his steroid doses (to ward off graft vs. host disease) are being decreased too. The steroids cause high blood pressure. Please pray that his bp will be lower.
I am getting very excited about going home in a little over a month. It has been so long since I've been home. They say that "home is where your heart is" - but half of my heart is here and half of it's in Wisconsin. I want a whole heart. Please pray that Jeremy and I will be on the road home on March 1st.
I don't have as easy access to a computer as I used to. That's why updates are far between.
Thank you for your prayers and words of encoragement.
Love,
Tanys
Monday, January 15, 2001 at 02:13 PM (CST)
Hello - Day 59
Must be very quick - Jeremy is fussy. I don't have access to computer as much, so can't update as often.
Jeremy is doing OK. CMV came back, so he's on more antibiotics. Please pray for recovery.
Gotta go.
Love,
Tanys
Saturday, January 06, 2001 at 12:22 PM (CST)
Hello - today is Day 50 - only 50 more to go!
This will be very short and sweet - Randy left for Wisconsin yesterday morning. The flight went well. Thank you, Jesus. Yes, I was worried.
Jeremy is doing well. He is smiling more and more every day. I love it!
Thank you for your prayers. I am feeling much, much better. Things don't seem as daunting. I changed the schedule of his meds that I give him (moved them to a later time in the day - 8 AM was too early and I was too stressed to try to get them done before we go to Clinic. Now I do them AT Clinic.).
Anyway, even though I'm even more lonely now that Randy is gone, I don't feel so anxious about things.
Please pray that Jeremy continues to do EXTREMELY WELL and we can go home at Day 100 (February 25th).
Also pray for my job situation since I have no idea what to do - we will need someone to care for Jeremy if I am working. So, the question is, do I work or not? Please pray.
Thanks, and have a great day!
Love,
Tanys
Sunday, December 31, 2000 at 09:12 AM (CST)
Good morning. How I wish we were home and could go to church. I miss going. We go to a WONDERFUL church with WONDERFUL people. Someday soon ...
I think today is Day 43 but I'm not sure. My calendar is missing still because we were discharged on Wednesday and I haven't found everything yet.
Jeremy seems to be doing well, although he did come down with CMV (a virus) that he is getting some pretty powerful antibiotics for. They told us that 10 years ago this virus would have been deadly. Praise God for antibiotics!!!
I have to admit that it's been pretty scary being out on our own. At least in the hospital if anything happened or if we had a question, the nurses were RIGHT THERE! Now, it's either a phone call or a quick run to the hospital. We had to bring Jeremy in Friday night at 2:00 AM because he was crying and unconsolable. We didn't know what was wrong. We also had to figure out if this was a "normal baby" thing or if there really was something wrong. It turns out that there was something wrong - the CMV. It was caught very early so it should clear up quickly, I hope. Now, because he is on antibiotics three times a day, we have to come in to Clinic three times a day. I don't know if that will change after the holiday and home health can come in the evening, but right now we come in at 8 or 9 AM for one treatment (2 hours), then another at 4 PM and another at 10 PM. I haven't figured out if it's easier to just stay ALL day or going home for a while.
Please pray for me - for MY endurance, strength, and wisdom during all of this. I cried this morning because I felt so overwhelmed by it all. I don't know if I'll be able to do it. There is so much to do. Being home is not that easy. I am giving his daily oral meds twice a day and hooking up IV meds (3 of them) twice a day. They say it will get easier. Right now, I just don't see how. Randy is leaving to go back home on the 5th. He won't come back until March 1st. All I can think of is getting home to Eau Claire - and, really, that opens up another whole can of worms because of my job situation. I still don't know what I'm going to do about going back to work and we will need someone to watch Jeremy if I do go back to work. He can't go to day care because of the immunity problems so we need someone who can come into our home two or three times a week.
I'm rambling.
As you can probably tell, I'm feeling kind of low, so please pray for me.
I should tell you some positive things about being out of the hospital. For one, NO MORE VITALS just after Jeremy has FINALLY fallen asleep! Another is PRIVACY. I nurse Jeremy. You can imagine just how NOT private the hospital is.
Please pray for:
Jeremy - for God's healing and speedy recovery. I specifically pray that the angels stand guard around him, battling anything that tries to get to him.
Randy - for a safe flight home on January 5th. He and Adam will be on their own for a while. Grandma and Grandpa are there to help out.
Adam - for his safety. I always worry about that. That's what moms do.
Me - I guess I can't stress enough how much I need your prayers right now. I really feel overwhelmed. I just want to sit and cry and cry - but I literally don't have time to do that.
Thanks for putting up with my rambling. Have a safe and happy celebration tonight. We will be sitting in the treatment room while Jeremy gets his meds, but we will watch the New Year come in and praise God for this chance for Jeremy's life. We are obviously very thankful for this and I know we don't glorify God enough.
Love,
Tanys
Tuesday, December 26, 2000 at 10:21 PM (CST)
Hi all and Happy Holidays!!!
Well, maybe we will get out of the hospital on Wednesday Dec.27th. Jeremys blood pressure was still kinda high but they tried another medicine that seems to be working. It alwys seems like things just keep pooping up.
Jeremys single lumen (his small central line) was completely plugged and surgeons came up to his room and took about five minutes to pull it. No pain medicine or anesthia or anything. I guess it doesnt hurt much because they said a shot to numb his chest would hurt worse than the procedure. The central line goes into one of the veins in his heart. It just seals up on its own. Scarry but he was fine and wasnt crying.
His white cells are fine, count was at 19.8 and they have backed off the medicine that stimulates the white cells to grow. We think he is starting to grow red blood cells and platlets now to because the days between transfusions are getting longer.
Dr Kurtzberg said today she has never seen a baby do as well as Jeremy has done so far. The effects of the chemo were not to bad and his white cell counts have been wonderfull. And it seems like Jeremy is not feeling to bad even though they like to come in at all hours and mess with him. Im not going to miss someone taking vital signs just after he's fallen asleep - this always makes him mad. We noticed Jeremy is really starting to learn about the world around him. He has officially smiled at both of us (I think he smiled at me weeks ago but my wife does'nt count that - I'll humor her!) He notices people and looks at things, he even watches TV for a few minutes. He makes plenty of noises and seems like he is trying to talk to us. He is very expressive when he's feeling well.
We had a Merry Christmas and Jeremy got presents from Santa Clause also. Thanks to all who gave us presents. We are very gratefull.
Bye for now.
Randy
Saturday, December 23, 2000 at 07:58 PM (CST)
Hi all, Merry Christmas. Randy here.
Jeremys blood pressure was still high so instead of leaving the hospital thursday or friday we will leave next tuesday, the day after Christmas. Jeremy is doing fine, their just fine tuning his blood pressure medicine. His white cell counts are fine,
he was
10.2 on Dec 19th,
11.9 0n Dec20th,
15 on Dec 21st,
14.8 on the 22nd,
13.8 on Dec 23rd. Its normal for it to go up and down some.
Tanys and I had a major scare today when Jeremys IV tubing got caught under a wheel of a chair and it cracked a connecter. We checked and it looked ok but five minutes later I saw blood coming back thru his tubing and a couple drops on the floor. We panicked and pushed the button and nurses came running. Jeremy was fine and they just clamped it off and replaced the line. With ten foot of tubing things can happen easily but no harm was done.
We have much to be thankfull for.
Jeremy is rcovering nicely!!!
The transplant lab donated gifts to all the children on the floor as well as for Tanys, Adam and myself. Other patients have returned to visit and dropped off gifts as well. A church group provides a supper once a month. Our best buddy Heidi gave us presents. For not planning on having a Christmas, this has turned into a joyfull one for us!! I hope Adam and my folks are having a joyfull Christmas as it will be awhile before we are all together again. I know Adam and us received presents from a group from Chippewa County( I think from a snowmobile club) I cant wait to see them. Many others have been generous to us also and I want to say a big collective THANK YOU!!!! Keep praying for us as well as the other kids that are sick and may God reward you far better than we ever can.
Thats all for now,I hope you have a Merry Christmas and a Happy New Year.
Randy
Tuesday, December 19, 2000 at 06:32 PM (CST)
Hi all and Merry Christmas!!!!!!!!
This is Randy, sorry we havent updated as often as we'd like to, but we been busy. Jeremys white cell counts.
Dec.15th--4.1
Dec.16th--5.4
Dec.17th--5.7
Dec.18th--7.9
Dec.19th--10.2 Yeahhhhh!!!!
They are giving Jeremy something to boost his counts and its working. They expect to level out around 20-30. Higher than normal but just what they want at this point. Jeremy has had a few good days lately, very calm and alert. He is interacting with us alot more, he has so many facial expressions. He is so cute. His head bobs all over when we hold him up and he is learning to control it. He has lost a little weight, he weighs 9lbs 1oz, but the docters dont seem worried about it at this point. Alot of his early weight gain was water retention from the medicines. He was up to 9lbs 6ounces about three weeks ago.
So much of his developement will be different than other kids because of the chemotherapy and the transplant and all the medicines he is receiving, but he seems to be doing very well and he has a good appetite. We can take him out in the hall without a mask and he enjoys looking at everything. He is two months old now.
We thought we would be discharged tuesday(Dec 19th) to the Ronald Mcdonald house but Jeremys blood pressure has been to high and they are trying to get it under control before he is discharged. This happens to alot of the kids and is caused by all the medicines he is getting. He only has one IV pump connected to him know and they just switch medicines on it. We are hoping to be discharged on thursday or friday but we dont know for sure.
So many people have been so kind to us, I want to say thank you to all of you one more time. Tanys, Jeremy and I are all doing fine and are gratefull for all your help.
I will be flying back to cold and snowy Wisconsin on January 5th. And I think I work again on January 8th and 9th. I will leave the car in North Carolina so that Tanys can go to clinic every day. I will come back to N.C. about the 1st of March when Jeremy can come back to Wisconsin.
Thats all for now, Merry Christmas -Happy New Year and may God Bless!
Randy
P.S. We are putting new pictures in the journal - check them out
Friday, December 15, 2000 at 08:28 PM (CST)
Day 28
Are you ready for this? Jeremy's count is at 4.1!!! We can take him out on the unit and he doesn't have to wear a mask. What an exciting event that was - to be out of our room WITH Jeremy! Thank You, Jesus, for growing his cells so quickly.
Jeremy will be discharged Tuesday, December 19 to the local Ronald McDonald House, where we will stay until March 1 (then home, yey!!!). He will have to wear a mask when he isn't on the unit and he can't be around anybody who is sick or be with more than 5 other people at a time. It's going to be so different to be out of the hospital. We won't have the 24-hour help of the nurses anymore. I have been learning how to draw blood for his labs, change his dressing, change the caps on his lines, flush his lines, etc. It's going to be nerve-wracking to do this without nursing supervision. They keep saying that I'll soon do it so well that I'll be able to do it in my sleep. We'll see.
Randy made it safely from Wisconsin. He had his second flat tire the day before he left. It's kind of a good thing because it forced him to get all new tires on the car the day before he drove through blizzards in Illinois and Indiana. He stayed in Indianapolis a mile from the Motor Speedway, which he drove around (he wishes on the track!) before he left. When he got to North Carolina, he drove through 200 miles of pea-soup fog. Not fun. But, thank God, he made it safely. He will be flying back home on January 5, 2001 so that I can have the car to go to clinic and pharmacy. He will fly back March 1 to pick us up to go home!!! Yey!!!
After the weather that Randy lived through in Eau Claire (-18 degrees), he is thinking of moving to Kentucky, Ohio, or North Carolina - where it's warmer! That won't be for a while, though. Let us get home first. I'm not sure how I feel about that. Right now, I want to be home so bad that the thought of moving doesn't thrill me. Maybe in the future, I'll feel differently. I know that I don't like how cold it is in Wisconsin either.
Well, it's time to go. Again, I'll fill you in on prayer requests at another time. We need to use the phone right now to call home.
Thank you so much for your cards, letters, and messages. What a thrill and blessing you all are.
Love,
Tanys
Thursday, December 14, 2000 at 12:18 PM (CST)
Day 27
Hello, All! Jeremy is now at 3.2, which is over 3,000 white cells. Shout to the Lord! He is going to be discharged on Tuesday, December 19. What a thrilling, scary, awesome, overwhelming day that will be.
Randy left Wisconsin yesterday morning and traveled through some pretty bad snow. He stopped in Indianapolis. Thank You, God, for keeping him safe. He is planning on traveling the rest of the way today. Please pray for his safety through the snow and eventually icy rain as he gets closer to North Carolina.
The clothing saga: Well, we haven't found our clothes. The three baby items that the laundry found weren't Jeremy's. (What are the odds that three items were lost and three items were found, but they weren't ours?) I am disappointed, but if this is the worst thing that happens in this whole journey, I'll take it!
Thank you again, for keeping in touch. I know many of you have left messages and even emailed. I'm sorry if I haven't personally gotten back to you. I will try and may eventually get back, but I have been (and will be) very busy. But I thank you for keeping up on your end.
Please keep praying. I'll update on some specific prayer requests in a couple days.
Love,
Tanys
Sunday, December 10, 2000 at 06:39 PM (CST)
Day 23 - I must keep this very short - you-know-who is hungry.
Jeremy's count is at 1.9 today - nearly 2,000! Discharge date has been changed to December 18 or 19 - Dr. Kurtzburg is starting her rounds that week and would like to see Jeremy before he leaves the hospital. She is the doctor who talked to us when we found out about the disease. She called us and talked for over an hour!
I'll write more when I can - please keep praying!
Love,
Tanys
Wednesday, December 06, 2000 at 12:22 PM (CST)
DAY 19 -- Praise to the Lord! Yesterday, Jeremy's cell count was at .7 and today he is at .8!! He is officially engrafted! He is still having trouble with the high blood pressure, but I was reassured by the doctor. Jeremy will probably be discharged from the hospital at the end of next week. Then we start a new phase of this journey. We will have to go to clinic every day (including Saturday and Sunday) to have him checked out and receive blood transfusions, if necessary. I guess the clinic visits are all-day affairs so it won't be a life of leisure, that's for sure!
Randy and Adam are doing well at home in Wisconsin, although they tell me the wind chill is below freezing. I guess I'm not missing much. Randy is planning on coming back here just before Jeremy gets discharged. Please pray for his safe journey.
What a difference a bed makes! When we first were admitted to the hospital, Jeremy had his own crib and I slept (when I COULD sleep) on a pull-down cot that was surprisingly very comfortable. Maybe I thought it was comfortable because it wasn't often that I actually got to lay down on it and sleep! Anyway, after many, many, many days of very little sleep because Jeremy really likes to sleep next to Mommy, I finally got a regular hospital bed, got rid of the crib, and now Jeremy and I sleep comfortably, with him snuggled right next to me. I think he just likes knowing I'm right there. I even got 5 whole hours of sleep RIGHT IN A ROW the other night! That hasn't happened in a LONG time! He had a rough night last night though, probably from his cells growing. They say it hurts - much like "growing pains" hurt kids. I felt so bad for him and held him and rocked him. The nurse gave him Tylenol and Benadryl to help him calm down and sleep and he finally did about 4:30 AM. What a night! I woke up at 8:30 AM, ate my breakfast, fell back to sleep, and woke up at 1:00 PM to eat my lunch. I felt like a baby myself! :)
I have a few things for the prayer list:
* Randy's safe journey (he actually has to travel the route back and forth again after this.)
* For Adam when Dad has to leave again next week.
* For Adam's grandparents, who are watching him while we are in NC.
* For Jeremy's continued healing and development.
* For my job situation - it's kind of up in the air what's going to happen to my job. I'll have a job when I get back, but not my position I had when I left - which I LOVED! So, I'm a little depressed about it but waiting to see what God has in store for me. (I always wanted to be a stay at home mom, but I carry the insurance, so I need a job at my company.)
* And something minor - A few of our clothes (mine I don't care about, but 3 of Jeremy's sleepers - 2 very special ones) came up missing. We think housekeeping inadvertently put them in the hospital laundry, or they might have thrown them away by accident. I know it's a long shot, but God cares about what's important to us and I would really like to have this stuff back.
Thank you again for all your prayers, your thoughts, your words of comfort, and for checking in Jeremy's progress. It's so cool to open his site and see how many of you are interested.
God bless you!
Love,
Tanys
Monday, December 04, 2000 at 08:43 PM (CST)
Today is Day 17 and Jeremy is on his second day of his cells being at .5. If they are at .5 or above tomorrow, he will be considered engrafted. So you all know what to pray for!
The steroids he is on that fight graft vs. host disease are causing his blood pressure to go really high. So far I think the highest has been 130 over something. That's really scary. The docs are giving him something to bring it down. It all seems to be like dominoes where one thing causes another thing to happen, which causes something else to happen, and so on and so on.
He is doing really well, though. The doctors are very happy with how he is doing. Please keep praying for continued quick healing. We are anxious to go home (which won't be until March if everything goes well).
Randy made it home all right. Praise God! He has been spending time with Adam, his folks, and our very lonely cat, Tigger. He will come back to NC when Jeremy is expected to be discharged from the hospital, which could be sometime next week. We will still have to stay in this area until March, and then we will get to go home!
Please pray that all goes well for Jeremy. He's a little trooper.
Love,
Tanys
Friday, December 01, 2000 at 11:24 PM (CST)
Day 14 - I haven't been able to update in a few days. Jeremy has been very needy. The doctors say that the steroids he is on make him very hungry so I have to nurse him all the time. Thank God he's nursing! There was a chance that he would have stopped eating all together because of the mucositis. He is on TPN, which is nutrition through the IV. He will be weaned from that eventually. I just wonder how hungry he'll be when he's not receiving THAT!
After dropping to .2, his cell count was back up to .3 today.
I'll have to make this very short - he's awake again and wants to eat.
Randy left for Wisconsin this morning. He called a little while ago from Cincinatti. If I spelled that wrong, sorry. Please pray for a safe trip the rest of the way home. He left here very tired because he held Jeremy while I slept for a while last night.
Gotta go - Jeremy is now fully awake.
Thank you for your continued prayers.
Love,
Tanys
Tuesday, November 28, 2000 at 10:27 PM (CST)
Hello all, DAY 11
Randy here. More good news to report. Jeremys white cells were .1 on Sunday, .2 on Monday and .3 (or 300 cells) on Tuesday. Jeremy is definitely on the road to engraftment!!! It will still be a month or two before he is producing platelets and red blood cells, but that is normal. Jeremy is having many good days now. He is getting bigger and notices things going on around him. He still hates having his diaper changed and cries harder about that than anything else. He is such a sweety and the nurses love to take care of him.
If all goes well, the doctors said Jeremy could be discharged from the hospital as early as late next week. WOW!! Its coming much faster than we anticipated and I am scrambling to return home for a few days and get some supplies and take care of things. I probably will leave thursday and get home late friday(about 1200 miles). And then return around December 8th to help with the transition to the Ronald Mcdonald
house.
I also am applying for unemployment for the month of December - a blessing in disguise - because I'll have some income coming in and be able to spend more time with Jeremy. I will still have a job when this is done also because business is really slow at my job right now but that will pick up again in January. I am a lab technician testing rubber samples for companies that we mix rubber for that build tires with it.
Tanys and Jeremy will still have to stay in Durham North Carolina for at least 100 days after transplant,(we are at day 11) and they will have to spend a lot of time as an outpatient. Jeremy will be getting blood transfusion, lab tests etc. And if anything were to happen, the doctors here know how to treat it better than anybody at home. As the white cells come in we have to worry about Graft vs. Host disease, but they give medicines to counteract that. They are going to start weaning Jeremy off some of the medications he is on now, but he will still have some when he leaves the hospital.
We are so happy about Jeremys progress!!! God has really answered our prayers. We are thankfull to God because thru this whole terrifying experience we have been able to see his hand at work - And he has never let
us go!!!
Good night and May God Bless you all!!!
Randy
Sunday, November 26, 2000 at 06:55 PM (CST)
EXTRA! EXTRA! EXTRA! READ ALL ABOUT IT!!
LOCAL BOY SCORES IN FIRST QUARTER!
TEAM SCORE
Cells 1
Krabbes 0
PRAISE GOD!! We heard the fantastic news at 6:00 AM today (DAY 9) that Jeremy's cells have begun to grow. Needless to say, we are thrilled! The count is at .1, which is really 100 (a normal adult's count is 5,000-6,000). Don't ask me what that means, only that the cells are growing. GROW CELLS GROW!!!!
Jeremy is doing very well. He seems to back to his usual self. He's nursing and even might be getting back to a normal day and night schedule. (Yey, Mom and Dad could possibly sleep at night again!)
FYI - Jeremy gets blood transfusions every few days because he isn't producing any of his own yet. As time goes on, and his bone marrow grows, the transfusions should decrease.
We are feeling more optimistic than we were a few days ago. We are feeling the effects of all of your prayers. God has been holding us so closely. As a good friend reminded me, we keep looking for those footprints in the sand.
We still need your prayers about:
* Jeremy and his healing
* Randy's job situation
* Adam - he's feeling lonely
* Gerry and Geraldine (Randy's folks who are watching Adam) - strength, stamina, patience
* Me - I still, at times, feel "gipped" - like I never got to enjoy those special newborn times like a brand-new mom.
* Our income and insurance issues
Thank you so much for your prayers and support. We've received some cards - they are SO welcome! We also like to hear your comments in our guest book - so keep checking in and writing to us.
We will keep you in touch.
Love,
Tanys
Sunday, November 26, 2000 at 06:55 PM (CST)
EXTRA! EXTRA! EXTRA! READ ALL ABOUT IT!!
LOCAL BOY SCORES IN FIRST QUARTER!
TEAM SCORE
Cells 1
Krabbes 0
PRAISE GOD!! We heard the fantastic news at 6:00 AM today (DAY 9) that Jeremy's cells have begun to grow. Needless to say, we are thrilled! The count is at .1, which is really 100 (a normal adult's count is 5,000-6,000). Don't ask me what that means, only that the cells are growing. GROW CELLS GROW!!!!
Jeremy is doing very well. He seems to back to his usual self. He's nursing and even might be getting back to a normal day and night schedule. (Yey, Mom and Dad could possibly sleep at night again!)
FYI - Jeremy gets blood transfusions every few days because he isn't producing any of his own yet. As time goes on, and his bone marrow grows, the transfusions should decrease.
We are feeling more optimistic than we were a few days ago. We are feeling the effects of all of your prayers. God has been holding us so closely. As a good friend reminded me, we keep looking for those footprints in the sand.
We still need your prayers about:
* Jeremy and his healing
* Randy's job situation
* Adam - he's feeling lonely
* Gerry and Geraldine (Randy's folks who are watching Adam) - strength, stamina, patience
* Me - I still, at times, feel "gipped" - like I never got to enjoy those special newborn times like a brand-new mom.
* Our income and insurance issues
Thank you so much for your prayers and support. We've received some cards - they are SO welcome! We also like to hear your comments in our guest book - so keep checking in and writing to us.
We will keep you in touch.
Love,
Tanys
Sunday, November 26, 2000 at 06:45 PM (CST)
EXTRA! EXTRA! EXTRA! READ ALL ABOUT IT!!
Hometown Boy Scores in First Quarter
TEAM SCORE
Cells 1
Krabbes 0
What wonderful news and all praises to God! We got the word this morning (at 6:00 AM) that Jeremy's cells are starting to grow. They are at .1, which means they are at 100.
Saturday, November 25, 2000 at 10:48 PM (CST)
Hello, Jeremys Dad again. Thanksgiving day was rough because Jeremy had fevers and was miserable and seemed to be going down hill. But by Friday his temperature had dropped and we increased the pain medicine and he was fine. By Saturday his temperature was back to normal and staying there. He started nursing well again although he does still have muccous come up and we have to suction him. But I think that is showing some improvement also. The doctors say everything is normal and Jeremy is fine. He is on three antibiotics now and they seemed to clear up a staph infection that he had. Saturday was a good day for Jeremy - he seemed like his old self again. He holds his head up and looks around alot. Trouble is he has his days and nights mixed around so he's awake alot at night. I stay at the hospital till 2-5AM and let Tanys get some sleep, then I go back to the Ronald Mcdonald house and get some sleep.
Tanys and I got a chance to go shopping together for a couple hours while our best buddy (Heidi) came and watched him for a few hours. It was fun to be normal for a few hours.
Jeremy has a rash over his whole body that started yesterday and is getting worse, but it doesn't seem to be painfull or bother him at all. And best of all, IT COULD BE a sign that his engraftment is working. It could be his blood cells starting to grow in his bone marrow. But it is really early (Day 8) after his transplant and the average is about 24 days for engraftment to begin. Grow Cells Grow. It could also be a reaction to medicine or something else but we are remaining hopefull.
I got some disturbing news from home and I'm not sure what to do about it yet. I work at American Phoenix, a rubber mixing facility for tire plants and business is really slow there. They are laying off alot of people till the end of December until business picks up. I might be able to get unemployment or I might be going home and not have a job. This is not a good time of year to not have any income. I'm going to talk to some people next week and see what I can do. My son Adam is lonely in Eau Claire and they want me to return for awhile. So I might be returning home for awhile but I'm not sure.
Its good to here from you all and talk to you later.
Randy
Thursday, November 23, 2000 at 09:28 PM (CST)
Day 6 -
It's been a very different Thanksgiving Day than what we expected this year. It started out pretty scary. Jeremy was making weird grunting noises and seemed like he was in pain. We didn't know what what was wrong. The doctors looked at him and said that the mucositus was probably giving him some pain so they increased his pain medication by .5 .ml. He settled down right after that.
Later in the day, after his IV lines had been changed, the nurse accidently forgot to start his pain medication going again. Pretty soon he was very uncomfortable and we weren't able to comfort him. He wasn't screaming or anything, just moaning and looking very miserable. The nurse came back in and said she forgot to unclamp the line. (She's an extremely good nurse - we were not upset with her in the least.) He settled down within a few minutes. I'm almost glad that happened because even though we don't want our baby to be in pain, we wondered if giving pain medication was appropriate. After seeing him moaning for about a half hour this evening, we knew it was appropriate.
Like I said earlier, it wasn't the Thanksgiving we had planned this year. We called back home where the family was gathered and talked to everyone. I was informed by the Viking fans there that they were winning against the Cowboys. (I'm a die-hard Packer fan.) We wanted to be there with the family so bad, but we know we are doing the right thing by getting Jeremy treated.
We have that to be thankful for this year - that there is this chance for Jeremy's life. We already know that the only thing we want for Christmas is for Jeremy to be 100% healthy and to come home to Eau Claire. That would be the greatest Christmas gift of all for us.
Please pray for Jeremy. He's on two antibiotics right now. One for an identified infection and the other to cover anything else because he keeps getting fevers. This is all normal, the doctors say, which puts our minds at ease somewhat. The doctors here are wonderful. They are so patient with our endless questions and explain everything we want to know. The nurses are also wonderful. Very helpful. Our primary nurse, Maggie, even sat and held Jeremy for about 2 hours last night so that I could get some more sleep. I needed it. I thanked her profusely!
Please pray for us. We get discouraged at times, seeing Jeremy so uncomfortable and not acting like the newborn that he is. I'm thankful that his pain is under control and that he can sleep through most of this.
I hope you all have had a wonderful Thanksgiving. An area church brought in a yummy meal with all the trimmings. They also sang Christmas carols around the unit. The people here are so nice. Everyone we talk to is always encouraging us to "keep the faith." We are. I often wonder how people who don't have God get through things like this.
We are looking forward to next year's Holiday season at home.
Love,
Tanys
Tuesday, November 21, 2000 at 08:06 PM (CST)
Hi- Jeremy's Dad again. Wow, I am amazed and thrilled to see how many people are checking Jeremy's website each day - over 500 people have visited so far. Its encouraging to us. This internet is a good thing-people from all over the USA have have heard about us and are keeping us in their prayers - Thank You!!!
Jeremy is feeling the effects of the mucositus caused by the chemotherapy. He has almost given up on nursing but tonight he was able to for about ten minutes after not nursing for almost two days. He is getting what we call Mountain Dew in a bag so he won't be to hungry. Its an IV solution with vitamins and nutrients. The nurses describe mucositus as being very painfull. They say it would be like having a cold sore in your mouth and then having your entire digestive tract covered with them and multiplying the pain by ten. Another nurse said it would feel like burning the roof of your mouth on something hot - only all the way thru. Its because the effects of the chemotherapy cause those cells to die and slough off. Its miserable and all the kids in the bone marrow transplant suffer thru it. Jeremy is feeling more miserable from it and his immune system is at zero right now so he is very vulnerable to infections. We have Hepa filters in this room and for this hosiptal wing. Everyone that enters the unit has to wash their hands and also when they enter the room. Any one that is sick - including us, visiters, doctors and nurses can not enter if they are sick. We often see patients or others wearing masks too. His immune system won't be normal for at least a year so we will have to take extrodinary precautions to keep him safe. All of his white cells have been killed and we just have to wait for the transplant cells to get into the bones and start growing new blood cells and an immune system. It will be a couple of weeks before we see any improvements in his blood tests.
Jeremy sleeps more and they have started him on a small dose of pain medicine. He is not as sick as some of the kids are and they say its easier on infants than older kids. He has trouble with flem and muccous in his throat and either spits it up or chokes on it. We have to suction it out or pat his back as he often chokes and gags trying to get it out. Its very scary for us because it happens with short notice and you have to act quickly. It seems to happen about every couple hours. The doctors always say this is normal and it will get worse till about two weeks. It can cause bloody sores in his mouth and stool and not to be alarmed. My wife and I are starting to take shifts so one of us can hold him most of the time. It helps him sleep and helps the muccous drain. I want to be here to help as much as I can.
I was planning on leaving for home around Thanksgiving but because this is such a dangerous time for Jeremy, I am going to stay till at least the end of November. I wish we had more savings so I could stay longer but I am also needed at home too with our 11 year old son - Adam. I know he is lonely and he has a birthday coming up on December 11th. My wifes is December 16th so I usually have alot of shopping to do. But this year the only present we want is for Jeremy to Come Home Heathly.
Its 10:30 at night and the nurse just told us Jeremy has a staph infection in one of his central lines and they took blood samples and are giving him antibiotics. They also said this is normal but I think they say that to calm us down. Please pray that it is cleared up right away. He is nursing a little better now, thats encouraging.
Oh I wish life could be back to normal.
Well, its my turn to hold Jeremy - He has times when he's alert and looks around. He is SO CUTE. Again, thanks to you all and may God Bless.
Love, Randy
Sunday, November 19, 2000 at 09:20 PM (CST)
This is Day 2 post-transplant. Everything from now on is identified by what "day" it is. For example, the new cells are suppposed to start growing (GROW CELLS GROW!!) by Day 14-21. Pray that they do.
Jeremy is definitely getting the mucocitus. I know I'm not spelling that right, but, oh well. He has a lot of mucous that he keeps coughing up. We have to suction his mouth quite often. He's taking it all very well.
I hope that everything is harder on us than it is on him. They say that it's going to get a lot worse before it gets better.
We had to laugh today. It snowed. In North Carolina. I know they get snow here, but they say usually not until January. Of course, it also rained 3 days after we got here after they hadn't had rain in a month and a half. Did we bring it with us?
I thank you all for your prayers and words of encouragement. You wouldn't believe how it all helps. God is really providing the comforting words we need to hear (read) right now. So many people have been so wonderful to us.
Keep checking in!
Saturday, November 18, 2000 at 05:17 PM (CST)
The transplant went well yesterday. Jeremy is showing signs of mucositus (sp?). He has a lot of phlegm that we have to suction out so he doesn't choke on it. His rash from the ATG went away.
Please pray that he doesn't have bad reactions from the chemo and that the transplant works and engraftment takes place.
Check out the photo page - 2 new pictures were added.
Thanks for your prayers and encouragement. It's awesome to know that so many people are concerned about us.
Friday, November 17, 2000 at 07:27 PM (CST)
Sorry I missed updating all of you yesterday. We had what is called "the day of rest" and it literally was a day of rest. Jeremy received only the ATG and the nurses only came in a few times to check his vital signs, or, as I like to tease them, "Are you messin' with my baby and makin' him cry again?" They just laugh.
Today was the "big day" of transplant. The doctors say it is anti-climactic in a way because we all think of transplant as an operation, but all that happens is a bag (very small bag) of cord blood is hung and Jeremy received it through an IV. That's it. I will have a picture in the picture page hopefully by tomorrow. We took lots of pictures so you will get to see many of them (but only three at a time).
We considered this day as a day of new birth, a new chance for Jeremy, a new hope.
(A child is going by in the hallway right now with his IV tree. He has a gorilla hanging from the top - very cute.)
Anyway, the unit chaplain came today and prayed with us and said a blessing for the transplant. She compared the cord blood that Jeremy received to the blood of Jesus bringing new life. It was very moving and very special.
Jeremy didn't have any reaction to the transplant - something that can happen and that they watch for, ready with the medications to counteract anything. He has been such a little trooper through this so far. I really pray that the rest of this process goes smoothly for him. Right now, we're just in a waiting game, waiting for the new cells to grow. The children here on the unit have a motto, and it's posted every where, in their drawings (some have been framed) and it's "Grow Cells Grow!" Sounds like a cheer doesn't it?
I've read the guest book. Thank you so much for all of your heart-warming comments and your prayers. Please keep reading our journal entries. We will keep you all posted.
Wednesday, November 15, 2000 at 03:00 PM (CST)
Jeremy started the third step before the transplant on Friday. The medication is ATG and it wipes out his immune system. We were told that he could develop a high fever and a hive-like rash. The rash came in the middle of the night. Doesn't seem to bother him too much. He did get a fever this morning of about 101, but it soon dropped again to near normal. The second and third doses of ATG aren't supposed to effect him like that and hopefully they won't.
The doctors are happy with how he is doing so far and have said that he is doing what he should be doing.
My dad called from Colorado today. It was great to talk with him.
I feel better today. Not so sad about everything. Could be because I actually got to sleep last night (five whole hours in a row!). Previous nights, I would only get about 3-4 hours the whole night - and not at one time.
I miss home a lot. I think about getting back there probably way too much, though, and I'm sure that brings my spirits down more. I miss my son Adam - he's 11 and will be 12 in December so I'll miss his birthday, which really makes me sad. I miss my cat, Tigger. My mother-in-law checks our house every day and says he is one very lonely kitty. I feel so bad for him.
I prayed all the way through my pregnancy that Jeremy would be healthy. I kept saying, "He'll be OK." I guess God is taking us the long way around to Jeremy being healthy and OK. I'm not sure why this is happening, but we will have a healthy baby, which is all we ever wanted.
Wednesday, November 15, 2000 at 03:00 PM (CST)
Jeremy started the third step before the transplant on Friday. The medication is ATG and it wipes out his immune system. We were told that he could develop a high fever and a hive-like rash. The rash came in the middle of the night. Doesn't seem to bother him too much. He did get a fever this morning of about 101, but it soon dropped again to near normal. The second and third doses of ATG aren't supposed to effect him like that and hopefully they won't.
The doctors are happy with how he is doing so far and have said that he is doing what he should be doing.
My dad called from Colorado today. It was great to talk with him.
I feel better today. Not so sad about everything. Could be because I actually got to sleep last night (five whole hours in a row!). Previous nights, I would only get about 3-4 hours the whole night - and not at one time.
I miss home a lot. I think about getting back there probably way too much, though, and I'm sure that brings my spirits down more. I miss my son Adam - he's 11 and will be 12 in December so I'll miss his birthday, which really makes me sad. I miss my cat, Tigger. My mother-in-law checks our house every day and says he is one very lonely kitty. I feel so bad for him.
I prayed all the way through my pregnancy that Jeremy would be healthy. I kept saying, "He'll be OK." I guess God is taking us the long way around to Jeremy being healthy and OK. I'm not sure why this is happening, but we will have a healthy baby, which is all we ever wanted.
Tuesday, November 14, 2000 at 04:50 PM (CST)
Hi, this is Randy-I"m Jeremys daddy. I am so proud of my little boy. I tell him I love him a hundred times a day. This has been so hard for us. I really thought that with the 75% chance of Jeremy not having Krabbes that we would be OK. But, God has another plan for us. And I still believe that if it's Gods will, that we will all be together as a family again someday soon. I have a tremendous hope and faith that this is going to work. It's not an easy path to follow but I am very optimistic that the stem cell transplant IS GOING TO WORK. I think all the prayers and support from people are working and I have a certain amount of peace about it. I know we are in God's hands and to take one day at a time. He brought us to North Carolina for a reason and that reason is to heal Jeremy.
I still have times when I am afraid for Jeremy-and its still hard when they do doctor stuff to him. It seems like about every hour or so they come and take vitals or give new medicine or draw blood or something. He is hooked up to about 4-5 IV pumps at a time and they say this is still the easy part. Soon they expect Jeremy to run fevers as high as 104 and it can come and go for days. They also say he will start to be in pain and not able to nurse. So far he seems fine and is not really in any pain. The central lines into his chest helps alot so they never have to stick him with needles-Thank God.
I want to take a minute to Thank EveryOne that has been helping us- the list is long but I am so gratefull to each and every one of you that are praying or lending a hand at home or an encouraging word or involved in Jeremys care or helpng in any way. Believe me, so far this experience has taught me to appreciate the things in life that are really important. And I can't say enough how gratefull I am to you all . May God bless you all.
I look at Jeremy and I can't descibe the Love I feel for him - It is So Strong. He is such a sweet little boy. I can't imagine life without him.
I hope things are well at home. We have been walking around in short sleeve shirts down here, but it's starting to get cooler. It's so pretty down here too. There are streets where the trees cover it like a canopy - I love trees and their everwhere; they are just losing there fall leaves now so the colors have been beautiful.
Well, I've rambled on to long now but I had to let you all know how we are doing. Please pardon my spelling. I'm still learning how to use the computer.
Mom and Dad LOVE YOU ADAM and Gramma and Grampa. I will talk to you soon. Take Care and God Bless you All.
Love Randy
Tuesday, November 14, 2000 at 04:50 PM (CST)
Hi, this is Randy-I"m Jeremys daddy. I am so proud of my little boy. I tell him I love him a hundred times a day. This has been so hard for us. I really thought that with the 75% chance of Jeremy not having Krabbes that we would be OK. But, God has another plan for us. And I still believe that if it's Gods will, that we will all be together as a family again someday soon. I have a tremendous hope and faith that this is going to work. It's not an easy path to follow but I am very optimistic that the stem cell transplant IS GOING TO WORK. I think all the prayers and support from people are working and I have a certain amount of peace about it. I know we are in God's hands and to take one day at a time. He brought us to North Carolina for a reason and that reason is to heal Jeremy.
I still have times when I am afraid for Jeremy-and its still hard when they do doctor stuff to him. It seems like about every hour or so they come and take vitals or give new medicine or draw blood or something. He is hooked up to about 4-5 IV pumps at a time and they say this is still the easy part. Soon they expect Jeremy to run fevers as high as 104 and it can come and go for days. They also say he will start to be in pain and not able to nurse. So far he seems fine and is not really in any pain. The central lines into his chest helps alot so they never have to stick him with needles-Thank God.
I want to take a minute to Thank EveryOne that has been helping us- the list is long but I am so gratefull to each and every one of you that are praying or lending a hand at home or an encouraging word or involved in Jeremys care or helpng in any way. Believe me, so far this experience has taught me to appreciate the things in life that are really important. And I can't say enough how gratefull I am to you all . May God bless you all.
I look at Jeremy and I can't descibe the Love I feel for him - It is So Strong. He is such a sweet little boy. I can't imagine life without him.
I hope things are well at home. We have been walking around in short sleeve shirts down here, but it's starting to get cooler. It's so pretty down here too. There are streets where the trees cover it like a canopy - I love trees and their everwhere; they are just losing there fall leaves now so the colors have been beautiful.
Well, I've rambled on to long now but I had to let you all know how we are doing. Please pardon my spelling. I'm still learning how to use the computer.
Mom and Dad LOVE YOU ADAM and Gramma and Grampa. I will talk to you soon. Take Care and God Bless you All.
Love Randy
Tuesday, November 14, 2000 at 01:50 PM (CST)
Jeremy will be starting a new medication today, along with his chemotherapy. This new medication is the last step before the transplant on Friday, Nov. 17.
He is doing really well so far. He's a real trooper in everything. He cries the hardest when his diaper is being changed! The nurses are amazed at how well he's been taking his oral medications. He's such a good baby!
I am still feeling overwhelmed, as I probably will for a long time.
Monday, November 13, 2000 at 03:02 PM (CST)
Jeremy was born on a BEAUTIFUL day in October at St. Joseph's Hospital in Chippewa Falls, Wisconsin. He weighed 7 pounds, 4 ounces and was 21 inches long.
We immediately had him tested for Krabbes Disease since our first son, Alex, died from it 12 years ago. Unfortunately, 8 days later, we found out that little Jeremy does have the disease. To say we were devastated is an understatement. We thought our world had crashed at our feet and couldn't believe that it was happening again. We wanted this little boy so bad and our worst nightmare had occurred.
The next day, we talked to Dr. Kurtzburg, a doctor at Duke University Medical Center in Durham, North Carolina. Dr. Kurtzburg specializes in cord blood stem cell transplants for a variety of diseases. We were convinced that this treatment was the only option for Jeremy. It was either this, or wait at home for the bad stuff to start happening.
We left Eau Claire on Wednesday, November 1 and arrived in Durham late Thursday, November 2 and put 1169 miles on our car. We thought we were exhausted then, but after two days (Friday and Monday) of VERY intense testing (on Jeremy), we found out what exhausted is!
Jeremy was admitted to the Pediatric Bone Marrow Transplant Unit on Tuesday, November 7 after surgery to place three central lines. He started one round of chemo on Wednesday and a second round on Sunday. He will receive his transplant (using unrelated cord blood) on Friday, November 17.
I, as his mom, have felt very overwhelmed by all of this. I so wanted to have a normal maternity leave and enjoy my new baby. Jeremy is only 3 weeks old and already so much has happened in his little life.
Please pray for all of us - for encouragement for us (his mom and dad), that he doesn't get side effects from the chemo, that the graft takes, that there are no infections, and that he doesn't develop graft vs. host disease.
I will keep you posted.
Monday, November 13, 2000 at 02:57 PM (CST)
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