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Click here to go back to the main page. Wednesday, March 15, 2006 8:52 AM CST Wow- I don't know what to say! I'm fairly sure that people have given up on checking on us since I haven't updated this page for so long. Maybe someone will happen across this page and see that there is hope in all of this. Jeremy is 12 years old now, and has been in remission for 2 years on April 15, 2006. He was diagnosed with AML in May, 2003, underwent treatment but relapsed in February, 2004, and had a bone marrow transplant in April, 2004. Our lives today are a gift- even though we don't always remember it. Jeremy returned to regular school last year for 5th grade and when it came time for 6th grade we didn't have to make any special arrangemnts or worry about all the things that go along with considering sending an immunocompromised child to school- he just went to school. He played football this year, and has just finished up basketball. We are waiting for a call from the soccer coach to see when they start practice. He's on Safety Patrol, and has a friend that is a girl that is different than all the friends that are girls that he has had in the past. I still worry about bruises and paleness, lack of energy and appetite, and vomiting as those were the early symptoms of his illness. Those are all things that show up in childhood sometimes, and so far he's just had a flue or viral thing. I just wanted to share a little bit of our life after cancer story. . . Sunday, May 1, 2005 8:23 PM CDT Thanks for stopping in to check on Jerm. He has his year work up last weekend and is 100% doner cells and no sign of leukemia. We are so blessed and have been so lucky. A year behind us- it seems to have gone so quickly yet it seems to have been never ending. . . Thank you all for your continued support. Monday, April 4, 2005 8:41 PM CDT Hello everyone! Wow, has it really been so long since I have been back here?! Jerm continues to do very well. His basketball team placed second in the league. He's back in school full swing, although, somewhere through all of this he got the idea that he could pass 5th grade without doing the work. . . his last report card showed him that his teacher (who has been absolutely wonderful) meant it when she said she was going to treat him like all the other kids! Whew- haven't seen a report card like that. . . well. . . ever. So he's focusing on passing now. We have gotten ahold of a bassett hound puppy for Jerm. The puppies eyes just opened and we will be able to bring (insert name here- we don't know yet) home just two weeks after Jerm's first bone marrow birthday, which is April 15- also tax day if you need to remember. We are scheduled for his one year work up in Salt Lake on April 22- what a great day it will be! Thanks for hanging in with us as I don't come here often. I have a few minutes today, so I'm off to check in with everyone else! Tuesday, January 25, 2005 9:24 PM CST Last Friday I finally let go. I am working to convince Jerm that we don't have to live with fear of relapse or other cancer related issues in the back of our minds any longer. We went to his appointment at the Bone Marrow Clinic in Salt Lake. His counts were upper normal, the best I've seen without the support of nupogen shots since this all started. I don't know how to explain it- I just realized that it was time to move on- really. Not to just tell everyone how great Jerm is doing, or to put a brave face on things and tell people what I think I should instead of what I really fear, what is really in my heart. He's not so quick to buy it, but I think he seems more relaxed the last couple of days. So sincerely, things are going very well. Jerm is going to school everyday and is playing on the basketball team. He seems more timid in basketball, I think he's just so conditioned to be careful with himself now. Thank you for checking on Jeremy- your thoughts and prayers have made this entry possible. Tuesday, January 11, 2005 8:23 PM CST Hi everyone! I haven't updated again for too long- sorry- again! Jeremy started school again on the 4th, after Christmas break, and basketball practices. Things were going along great, they still are, but Jerm hasn't been feeling very well. He has hung on to some minor cold symptoms, runny nose and occassional sore throat with no fevers pretty much throughout late December. Nice, normal cold symptoms. Now, his stomach is bothering him and he is not eating very much. He has two bruises on the fleshy part of his upper arm and one on his calf that he can't remember how they happened, and he is low on energy. All of these things can be explained away by an increase in activity and a change in environment. Unfortunately, they have all been precursors to his initial diagnosis and subsequent relapse as well. It will be nice to not automatically overreact to normal childhood bangs, appetite changes and illnesses. Luckily we have our monthly appointment in Salt Lake on this coming Monday and will have a check up and a CBC. No worries:) Thanks for stopping by and checking in on Jerm. Tuesday, December 28, 2004 8:44 PM CST Happy Post Christmas to all! We had a wonderful Christmas-as expected. We overdid it with the kids again- oh well, they don't need to eat EVERY day in January:) Jeremy's appointment on 12/17/04 went well- his counts are stable and he doesn't have any illnesses. The Docs have reluctantly agreed that it may be in Jerm's best interests emotionally to get back in the ol' game and return to school. They do not recommend it fully on the medical front, however, have been very supportive of Jerm and willing to work with our family on weighing out his emotional well-being with any possible medical risks. Sometimes I just sit back and thank god that we have hooked up with Primary Children's Hospital. They have really been a saving grace through all of this. Not to say I haven't squawked about this or that- the important thing is that they have listened. So... when school starts up, we're giving it a go. Jerm has to carry hand sanitizer, take cold lunch, and bathe every day after school. Also, we need to keep in close contact with the teacher regarding epidemics of this or that. And. . . we have a pediatrician here in town that is willing to over test Jerm if there are any concerns that arise. He had begun to not get dressed everyday, refused to do homework, and began to withdraw from friends and family. We don't want depression and loneliness to consume him to the point that he can't bounce back. We are excited to see how it goes! Thank you for checking on Jerm- cross your fingers for a triumphant return to school! Friday, December 10, 2004 8:51 PM CST Hi- Wow. I really don't know what to say. I have been going back and visiting pages I have missed. I remember one day I just stopped doing Caringbridge- stopped updating Jerm's page, and stopped visiting some of our friends- well, all of our friends. I guess I just needed to take a break from cancer for a while- but how quickly the emotions come flooding back when I visit the sites. It's like a mix between survivor's guilt and survivor's fear. Let me explain- Jerm is continues to do really well and we are confronted daily with putting our lives back together post BMT. I thought we had already done that months ago, but I think at least emotionally we are in worse shape now than we were back then. We were working so hard at being strong back then. At the same time, each day is such a blessing- aargh! I sound like an idiot. It scares me to read of relapses and ill children- and I care so deeply that it hurts. I guess I got overwhelmed with cancer related hurts. . . I ended up on medication (not kidding!) for anxiety. Enough about that! I should stick to the factual stuff! Like I said, Jerm is doing quite well. He had his BMT in April and after the inpatiant hospital stay and the stay in the Ronald McDonald apartment we got to come home in late July, 2004. Since that time, Jerm has gotten one cold- had one day of nausea and mild fever, and that's it. His counts are staying stable and low normal. He hasn't been hospitalized, although had the fever gone 2 degrees higher he would have been admitted. He hasn't returned to public school yet, which has been a big issue for him, but is still recieving homebound. He wants to go to school after the holidays, and play basketball. The Doctors say probably not a good idea, Jerm says it's time or else! We have some talking and decision making to do. In the interim, we will enjoy the holidays, as they sparkle so brightly now that our family has been faced with the possibility of great loss. It is a shame that it takes something like this for us to appreciate even the tough times with our loved ones- but I have found that I am very different now. We go to Primary once a month now, with our next appointment on the 17th of December. Jerm has had stomach ache for the last couple of days and a headache, with decreased energy. He informs me that he is in a depression because he is now invisible to his friends. He has been very pale also, and I am a little concerned about what the appointment will yield. Ah well, one day at a time. . . right! MERRY CHRISTMAS TO EVERYONE AND ALL THE LOVE AND PEACE IN THE WORLD- Saturday, October 23, 2004 2:04 PM CDT Hello All- It has been so long since I have updated. . . I have missed you- reading your notes and visiting other pages. I guess it is good that I don't run and check the page everyday, and that I don't have disease related news hardly ever. For me, there is this balance between hanging on and letting go. We did have a little scare when we all got the flue, Jerm's fever went up to 100.6 and he was vomiting, but we didn't have to go in until he hit 101, and at 2 a.m. it started to go back down. He got better more quickly than any of us did, probably the acyclovir every day! We went to Salt Lake last Friday for a check up and Jerm got a clean bill of health again. He is almost done with his prograph taper and we are still looking forward to him getting back to school after the holidays. He has a home teacher, and is trying to keep up, but it's just not the same. He went skating last night and stayed over at a friends for the night, then went to watch his friends football game and is going to a birthday party after that. He's hanging in there, but I expect him to do a lot of resting on Sunday! Ray and I continue to work split schedules- it will be a relief to spend some evenings together when Jerm goes back to school, but for now, it keeps one of us home at all times. Jerm is feeling a little crowded, so sometimes we run to the store or library and give him some time alone! Jessie is working, going to school, and has a boyfriend. She is just doing so much better- I am so glad we were able to get home to her. Well- I hope to find some time to visit some caringbridge friends and see how you are doing- but for now, thanks for taking the time to check on Jeremy. He is due home from the football game any minute, and I have to go pick up Jessie for her lunch- plus, we are watching my niece's son today. Real life- ain't it wonderful! Saturday, September 18, 2004 12:30 AM CDT Hello and thank you to those folks who continue to check on Jeremy! I feel bad about the lack of current updates for everyone, but no news is often good news, and in this case that is so true! Life is so back to normal around here. We went up to Salt Lake to the Bone Marrow Clinic yesterday for his monthly check and he's doing fabulous. Counts are all stable, no infections, no illness, no problems. He has an itchy rash, determined to not be GVHD. Instead, it is dry skin due to the chemo and radiation treatments. Very treatable if he would let us get near him with the lotion. I suggested an "oatmeal bath", thinking Aveeno, and he was horrified. Always very much a boy- he's rather itch any day than bath in O A T M E A L! We find ourselves in somewhat of a bind philosphically, and somewhat at odds with the Doctors these days. We allow Jeremy to do everything he can do- biking, trampoline, fishing, paintballing, having friends over and letting him go over to friends (we do screen the homes we let him go to for cleanliness), and whatever else we can think of. We don't do school, of course, and avoid crowds. We didn't go to the fair this year, or the motocross races. Also we don't take him to buffets or salad bars. We try to be smart, but we refuse to put him in a bubble. Jeremy used to be kind of a sitter, preferring to watch TV or play a video game vs. going outside. This experience has had a huge impact on that, and we can't keep him in the house. If no one is around, he just goes on a bike ride or walk by himself. He said that he doesn't ever want to sit again after all that time in the hospital. We figure, as far as a relapse, we have no control, but if he ends up back in the hospital etc... we want his time to have been the best ever. And if he never gets sick again- he's had a great time too! We figure either way, we win. I think the Doctors feel like we take too many risks. Many of you can probably relate to these concerns as parents of a very ill child. But today- things couldn't be better. Jessie is in her Junior year of High School and I just got her excellent midterm grades! Yea Jessie! Ray and I continue to rotate working, so I haven't seen him much, but the distance must make the heart grow fonder, because we are sure happy to see each other when we get a chance! Jeremy really likes his homebound teacher and is working hard to catch up in school. He did fall behind this time, but I know he'll be ready to go back to school after the holidays. So- Ray and Jessie have taken our little nephew to his first flag football game today, and Jeremy stayed over at a friends house and is going to a Yu-gi-oh dueling tournament today. The cats and I are going to turn up the stereo and clean the house. I hope you are as much at peace as I feel today- thank you for taking the time to check on Jerm. Friday, August 20, 2004 9:28 PM CDT We went to clinic today and have even more good news! Jeremy had his central line removed today! His counts are stable. He may be showing some signs of GVH as his liver function and eosinophil are elevated and he has complained recently of stomachache and has some bumpy patches of rash like stuff. All of these things seperately may be nothing, but together, they may be something so we are going to slow down the taper of his prograf. It may be his stomach ulcer acting up again so we are going to add back in the prevacid. We will do a CBC locally next week and decide from there. Jeremy is feeling really well and wants to jump back into everything right away. School starts Monday, which is very difficult for him. We will be having a homebound teacher from the school district come in for a couple of hours a day and hopefully with the individualized attention he will be on track to go right into fifth grade after the new year. He is still pretty limited, in regards to crowds and some places, but he is biking, skating, playing basketball, and seeing friends. Thank you for stopping by!
Saturday, August 7, 2004 8:38 AM CDT Hi everyone! Jeremy had his clinic appointment in Salt Lake yesterday. All of his levels and counts and measures and functions etc. . . are great! The fluids are officially discontinued so now he is only on Septra, Prograf, Acyclovir, and Magnesium. His mom and dad missed a change in the prograf taper- way to go mom and dad :(, but it will just stretch it out a couple of days. He might get his line out at our next appointment, but he is hesitant because last time he got it out and when he relapsed he got poked frequently until the new one was placed. He's supposed to be thinking about it over the next couple of weeks. In other news, I went back to work on Monday. I'm pretty tired- no more lazing around until 10 or going back to bed if I felt like it - I was on Jeremy's schedule for a long time, and I think I was sleeping a lot! Ray is working evenings and I'm working mornings so we didn't see each other for a few days, but we are so happy to have our family together again that just sleeping in the same bed for a few hours is a treat. Jessie has really been helping fill in the gaps for us. She stays with Jerm if I get home a little after Ray has to leave and if I have to do some evening work. Ray and Jeremy are making up for lost time together. They are playing lots of video games and playing baseball at the park. They have also started building a couple of model cars, which keeps the tv off all day! As always thank you for stopping by to check on Jeremy! Sunday, August 1, 2004 9:36 AM CDT Good Morning! I am so glad to be sitting in my house this morning, just because. Jeremy is watching cartoons- classic Spiderman- and Ray and Jessie are still sleeping. Jessie will be 16 this month- nothing ages a person like realizing that thier firstborn is almost 18! I am starting to buy her household items, this week was some silverware, so that she will have everything she needs when she leaves home. She says she's leaving home the very second she turns 18. We'll see, but regardless of when it is, she won't be empty handed like so many of us were! Jeremy continues to do fantastic. His counts on Wednesday were excellent. He is still on fluids overnight but I expect that to D/C this week. We continue to wean him off of the immunosuppressive agents. He was on MMF and Tachro instead of the cyclosporin. After he has been completely off of them for three months we can consider him returning to school. Until then, we will have a teacher come in and work with him at home. We have a clinic appointment in Salt Lake on Friday this week and we expect only more good news. Jeremy has been a little frustrated because his is still immunocompromised and has the restrictions. He knows that his counts are good and doesn't really understand the reason he is still restricted this time. We try to explain that with a BMT it's a whole different story as far as vulnerability and recovery. Well- today is yard work day and grocery shopping. Tomorrow I'm back to work and Ray and Jeremy will start spending the mornings together. Video game villians beware! As always thank you for taking time to check on Jeremy. He is so cute- (sorry, mom moment). Tuesday, July 27, 2004 7:33 AM CDT Good Morning! Happily I have few things to report today. Jeremy is doing really well here at home. He is still on fluids and is slowly weaning off his immuno-supressive medication. I am a little worried because his appetite is decreasing dramatically again, and his bowel movements are not regular. We go in for labs on 7/28 locally, then to BMT clinic on 8/6 in Salt Lake. This seems like a long time for me, but as long as he is not sick we need to get used to not having to go to the Dr. every other day. It may just be the transition home, and that we haven't gotten to go big shopping at the grocery store yet to replenish the bachelor pad kitchen. I've had to throw away a lot of spoiled food - I don't know what those two ate this summer! This weekend we cleaned out the kitchen and Jeremy's room really well- it took a day for each of them. Jeremy's room was being used as somewhat of a catch-all. Ray is back to work again and I will go back next Monday. I will work from 7 a.m. to 2:30 p.m., and he will work from 3 p.m. to 12 p.m.. so that one of us will always be home with Jerm. If I have to work in the evenings to keep up, Jessie can watch him for a couple of hours. We have been very lucky that our employers have done whatever we need regarding scheduling and time off. A big thank you to the State of Idaho and Dell Computers! Work has been a bit stressor for many parents that I have met, but we have known that our jobs would be there regardless. It must be hard for Jeremy, as he was just getting to stay home alone a little bit before he got sick- but he doesn't complain. I think he likes us around. Jessie is helping her grandparents move this week- they have sold their home and bought a new one that is a little closer to us. Well- today Jerm is having a friend over. We are going grocery shopping and to the library, and we need to get supplies from the pharmacy. Plus there is still cleaning to do. . . some things never change! Thank you for visiting our page.
Thursday, July 22, 2004 4:26 PM CDT This message is coming to you live from Twin Falls, Idaho! Yep, we are home at last. We found out yesterday that Jeremy has 100% Jessie cells, and that there is no evidence of any disease. His hearing, thyroid, liver and kidneys are all fine. His pulmonary functioning has taken a small hit- but it should impact day to day living for him, and doesn't require any treatment at this time. He is still on fluids, but has been drinking a lot since getting home. Today his cousin is over and they are playing video games while I WORK ON THIS HOUSE. Ray is back to work again after he stay in Salt Lake with us, and Jessie is back to the task of hanging out with her friends today. I'd better get back to work- I just wanted to update everyone. This is the best day. . . again! Friday, July 16, 2004 11:19 AM CDT Wow- have I been lazy! Well. . . and I don't have a computer handy right now. We are here today for a final CT scan to make sure that those nodules in Jerm's lungs are gone. There is a lot of news- all of it good, how bout that! Wednesday we did Jeremy's 100 day bone marrow aspirate, his pulmonary functioning tests, and an auditory test. They also drew some labs at the BMT clinic for the 100 day work up. There are some pulmonary problems, including a resurrgence of asthma which is being treated daily with an albuterol inhaler now. Also he doesn't appear to be diffusing oxygen through his body at an optimal/normal level. There is nothing to be done about that, and it is a possible side effect of the treatments. It may prevent him from being in the NFL, but should not impact his other career choice of being a zoo veternarian. The preliminary results of the bone marrow aspirate indicate some blasts in his marrow, but blasts are developing cells, so they may be good ones and not cancer. Next week we meet with the bone marrow team and will get the rest of the results from these tests. One important one is to see if the cells are all doner cells- we won't know about that until that meeting. Also we will know more about those developing cells. And then. . . barring any unforeseen anything- we will be home next Wednesday by about 7 p.m.- and will only come for follow up appointments at Primary. Jeremy is having a difficult time getting through this week. He is so scared that something will go wrong to prevent him from leaving that he is paralyzed by it. He sits and stares into space and mood swings all day. I've called in the troops and Ray and Jessie are here and will be finishing this out with us. I just haven't been able to comfort or reassure him- so we're using up Ray's family medical leave because Jeremy seems to need us all now more that he ever has. Even Jessie didn't question being here for five days because I think she can kind of sense his distress when she talks to him. We will be living together as a family for the next five days for the first time since April- more laundry to do! Well- hopefully next time I am on here it will be from home. Thanks for checking on Jeremy even though his mom never updates his page! Wednesday, July 7, 2004 8:45 AM CDT Good Morning Twin Falls! I got a chance to run home for a couple of nights and a day. I had to renew my license and get Jessie's DRIVERS PERMIT. Ray stayed in Salt Lake with Jeremy and it sounds like they are having quite the time- playing video games and other guy stuff. Jeremy has an appointment at clinic tomorrow, at which time they will begin the tests for his 100 day work up. If all continues to go well, we aim to be home in late July. I really enjoyed seeing the pets and sleeping in my own bed. Ray has done a lot of work painting the kitchen and the bedroom. I had to open a few windows and buy some air fresheners- the house has some characteristics reminiscent of ye old bachelor pad. So- Jessie is driving me back to Salt Lake today. That's about it today- just going along. Have a great day- the weekend is almost here! Thursday, July 1, 2004 12:18 AM CDT Back at clinic today with little to report. Boring is good- they say up here. We continue to keep busy throughout the week- I am teaching Jeremy the valuable skill of pool playing at the arcade. We have started playing some baseball and continue to walk daily. We drove for miles and miles to a Chuck E. Cheese the other day- the salad bar was good but I don't recommend the pizza! Jerm is starting to wake up earlier and he is ready to go. The other day he said that he was mad at me because I was making him not want to sit in the apartment all day- I told him that it wasn't me, but him, and that it means that he is getting so much better! Every once in a while we have to revisit what "normal" was before he got sick. I help him remember that we were up and running early every day, and it is not our "normal" to get up at 10 and sit for a couple of hours before we do anything! We have some other things lined up but the Docs won't let us go to the zoo or Lagoon etc...as they are germ infested and he is still very vulnerable. While we appreciate them taking good care of him- we wish we could go, especially to the zoo. Our weekend with company went well- we were wore out when they left! This weekend Ray is coming up for the 4th and will get to stay for three days. Jessie wanted to stay with her friends for the holiday- I remember being her age and wanting to do the same, but I still worry about her when one of us is not nearby. We really miss all of our friends and family at home. Sometimes we even talk about streets at home. It is really nice to hear from you all. Thank you for your kind and encouraging words, and thank you for caring about Jeremy as he takes on more than he should have to. I have been so lax about visiting other pages and e-mailing folks back. Please know that every word we hear from you makes the days go faster. Have a great day! Thursday, June 24, 2004 12:04 AM CDT Hello again everyone! We are here for clinic today- and things continue to go well. Jerm has gained a pound plus in a week! We have virtually said goodbye to wheelchairs too! We have been keeping busy throughout the week, including building bears at the Build a Bear workshop, feeding the ducks at the park, visiting the great Salt Lake, etc. . .just trying to keep busy. Ray and Jessie stayed an extra night this weekend as a surprise for my birthday- it was the best birthday gift I've gotten! My mom also surprised us with a last minute visit- we've had a lot of fun having company this week. This weekend one of Jerm's friends is coming and Jessie is bringing a friend also- a full house, just like home! Except home is bigger- we still have to figure out where everyone will sleep. Thanks for visiting Jeremy today. I am happy to have little to report. Take care! Friday, June 18, 2004 4:18 PM CDT Hi everyone! Boy I've missed you. Ray has been updating the page for us- he's a little less wordy than me- clearly! We are in at clinic today for our weekly check. I am ecstatic to report that Jeremy continues to do well medically. His counts are staying up, he's eating and maintaining his weight, and all of his chemistry is in safe ranges. He is taking a bunch of pills each day, and is still on IV fluids at night- easy breezy! We are enjoying being in the apartment. We get to cook and clean, and go out when we want to. Well, I cook- absolutely whatever whenever he wants it, and I clean, although there's not much to clean. I usually save taking the trash out for a special outing! We go out everyday for some kind of activity that involves driving and walking- there are a lot of things to see here. Jerm still gets worn out quickly, but he makes progress in building his physical strength each day. We hope to be home in late July, if all goes well. Of course we must adhere to the "day by day" rule so that we won't be disappointed if something goes wrong, but right now things are going so well it is difficult to not get excited. I'll check in with you all next week- I love reading your messages and Jerm likes to hear about them too! Thanks for visiting us today- have a super day and enjoy the upcoming weekend! (everyday is like a weekend for those of us no longer contributing to society through employment- I wouldn't suggest trying it for more than a month or so though because it gets tedious :()OOPs- little venting- sorry. Tuesday, June the 8th Howdy ya'll. Jeremy is doing great. He does still get sick in the mornings, but is feeling better in the afternoons. This weekend his sister Jessie and I went to Salt Lake to see them. We all had an awesome time. We went to see the new Harry Potter movie. It was great. I heard that was because it had a different director. Anyway, it was really worth seeing. There was quite a few people there so we were kind of nervous about it, but it was worth getting him out of the apartment. Then we went to Applebees to eat lunch. That was the first time we ate out as a family in a long time. It's funny how you take things for granted, until something like this happens, then you know that every moment is very special. Anyway, thanks again for coming to visit Jeremy's site. Bye for now.
Thursday, June 3, 2004 5:09 PM CDT DAY BY DAY, DAy by Day, day by day. . . Jerm was discharged yesterday and got to the apartment at about 1:30 p.m.. He had a wonderful time watching TV and touring his new temporary home. He ate some "flat potatoes" and eggs, and some homemade brownies. He took all of his medications and got his TPN hooked up and crawled into a real bed for the first time in a couple of months. Unfortunately, he spiked a temperature today and had to come into clinic where he passed out briefly downstairs and in clinic. He has been readmitted for the continued considerations of an infection that can't be identified or a slow moving graft vs. host disease. He was dehydrated and is under conditioned, which contributed to his passing out due probably to low blood pressure. I don't know how long we will be here- it is usually longer than we expect and no one is close to any answers at this point. We will remain here for 24 to 48 hours minimum. I. . . lost it today. I felt like I did when he was first diagnosed- just that rush of emotion about the whole ordeal I guess. I recovered a lot more quickly- and wouldn't you know it, I haven't lost my appetite this time, instead I want to eat chocolate cake and ice cream and hamburgers and. . . . So, thanks for checking on Jeremy- I'll keep this updated so you all know when you can reach us at home instead!
Tuesday, June 1, 2004 12:30 AM CDT Cross your fingers, rub your lucky coin, throw a penny in a wishing well and/or throw up a prayer to whoever you feel is in charge of matters here on earth- if all goes well we are going to be discharged tomorrow. I woke up today thinking, ok, we need to walk, to eat, and to take pills today. Suddenly, I realized we can do all of that in an apartment as well or better than we can in the hospital. Jerm hasn't had fevers or vomiting for two days now. He walked yesterday and tried to eat a variety of foods, plus took all his po medications without a fuss. I talked to the Docs this morning, and they didn't need much convincing. I think we all agree that Jeremy may do much better overall if he is out of the hospital. He will have been here two full months on June 5. They are a little concerned, and they expect us back sooner rather than later- so I guess they will miss us when we aren't back! He will go home on one IV antibiotic and on TPN (IV Nutrition) and on a slew of pills. He has taken 10 pills in the last two hours and will have to do it all again tonight. He's also getting a blood transfusion today, which will give him more energy for tomorrow. We will have home health here in Salt Lake and we will be back for a clinic appointment on Friday so we are pretty shored up. His counts are better than they have been for the last year- Jessie's bone marrow is working away in there. Jeremy is not trusting this until we get out the door. I was going to start packing (talk about accumulation!), but he advised me to wait until tomorrow! He did say the first thing he wants to do is go and see Shrek 2. Ray is going to come up after work tonight and help us get moved over and settled in tomorrow. He will drive back tomorrow afternoon, then come back again on Friday for the weekend. Three cheers (and so many more) for Ray- he didn't even blink about coming twice in a few days. He is painting some rooms at home and taking care of the house, the pets, and Jessie. . . and working full time. I can sure pick a winner. . .our four year anniversary is this month and it has sure been a full four years! More than either of us bargained for- but (here comes a cliche) our relationship keeps getting better and stronger for it. Thank you all for stopping by and seeing us today. If you don't hear from us for a while it is good news because there is no computer at the apartment! Thank you again for your kindness and support of our family. Whoo hoo, we're bustin' outta here! Sunday, May 30, 2004 10:32 PM CDT O.K.- I've been very lax about updating. Some of the nurses wonder how I stay so pleasant despite how long we have been here. It is because I am on a self induced sedation. Everything has to stay pretty flat. What I am finding, though, is that it is challenging to muster up a lot of energy for small tasks. It is easy to fall asleep while awake after a while! I'm going back to no soda pop, lots of fruit and veggies and using only the stairs! Now before all you professionals and friends think "she's depressed", I want to assure you that I am keeping a close eye on things and I am fine- just tired. And . . . I have a lot of folks watching me everyday- they know what to look for! Jeremy is doing exceptionally well. We had a great visit with Ray and Jessie this weekend. He is walking and talking more, and continues to try and eat. His stomach is healing and today his fevers are absent. He fainted twice getting out of his bath today, probably due to the heat and he is beginning to feel the effects of laying in bed for nearly two months. He now knows why he was supposed to be cooperating with the physical therapists! We may be a while longer, but not too much before we move to the apartment. The visit with Kit Kat was really neat- he wasn't feeling well and only lasted about 15 minutes (Jerm I mean), but it did a world of good and reminded him of his life outside of this place. Thank you for visiting us- Thursday, May 27, 2004 11:43 AM CDT Hi everyone! Well Jeremy continues to feel well enough to leave his room each evening for about 20 minutes, and is talking about different foods incessently. He tries to eat a variety of foods but we haven't hit on "the one" that will work just yet. I am going to do some cooking at the apartment this weekend and bring some in for him. Tater Tot Cassarole is a favorite of his so we will start with that. He has had fevers bouncing up and down since Saturday with no break. They have not pinpointed the source of the fevers as there is no sign of infection and he does not have the other symptoms that go along with Graft vs. Host disease. Unless something blatant comes up indicating what the problem is, we will wait until next Tuesday before really changing anything. It is frustrating to just "wait" here, but in reality, we would have been admitted two different times for fevers already- so is it better to go home and have to come back, or to just be here anyway? The good thing is that he is walking and talking and even joking now and again. Today is a big, big day for us. The Docs gave permission for Jeremy to have a very special visitor today. Those of you who have been to our house have met Kit Kat (he's the one with the blue, blue, eyes). He's one of those pets that can tolerate just about anything from us humans. My mom is bringing him up here today to visit Jerm. Thanks mom! She is driving this cat up here (4 hours one way- cat in the car!) to visit, then turning around and going back. What Grandma's won't do. . . Who knows, maybe he'll make the fevers go away :). We have to visit with him outside and it is raining- but not too cold. I have a feeling it would be worth it even in a blizzard. Jeremy loves all animals, but of course adores our pets. As always, we enjoy your visits- Wednesday, May 26, 2004 11:36 AM CDT A child across the hall passed away last night. Let's all take the time to be thankful that our children and ourselves have the breath to back talk or to tell eachother we love eachother. Jerm's doing great- I'll update later. Monday, May 24, 2004 12:19 AM CDT Good Morning Monday! One thing about being up here is that the days run together so Mondays don't carry the same bleak, pre work week, post weekend signifigance that they did before! So- about Jerm- the scope performed on Friday afternoon clearly showed why he has been having stomach pain, so it is being treated. He has nasty looking ulcer type sores lining his esphogus right above his stomach. They are so close to his stomach that he defined them as stomach pain instead of throat pain, which was why it was difficult to pinpoint the actual problem area. His stomach is feeling so much better now- what a relief. Yesterday he started asking for different foods just out of the blue. He didn't eat much, but just a couple of days before that no one could even mention food in his presence. He has gone for a wheelchair ride outside of his room the last two days now, and continues to walk down the hall daily for a long soak in the bathtub. Things are looking up! Unfortunatly, the fevers that had gone away have reoccurred with no apparent cause. They are mild, but enough to keep us here until they are gone. A CT scan is scheduled for today to make sure it is not his lungs mysteriously acting up again. Also he is recieving additional antibiotics in hopes that one of them will stem the fever tide. I am still hopeful that we could be discharged within a week or two at the most. Well, I just thought I would let everyone know what was going on up here. And. . . I just want to let everyone in my life- my friends, my family, my co-workers, just everyone who makes our lives what they are at home that we miss you so much- even if we don't like you (that's very rare) we miss you. I miss the very streets that I drive on, and grocery shopping, and my house. And Western Days- believe it- when you are in a postion to not be able to go to Western Days- you actually want to go- even to the parade! I think the official diagnosis is homesickness- but in my experience it comes and goes at varying levels of severity. Once we get out into the apartment and start exploring this surprisingly lovely city and it's surrounding area we may be too busy to think of home so much. I wish all of you the best day- thanks for checking on Jeremy. Friday, May 21, 2004 11:06 AM CDT So I haven't updated for a while, because there is not much to tell you. I think we got the burning feet under control- it was caused by a drug interaction (that's what I think). He is vomiting more and more- so he is back on IV meds except for the one that would require reinsertion of a pic line. Today we are going for a scope of his gut to possibly specifically identify graft vs. host disease, or to rule out other infection in his stomach. He will go under general anethesia for the procedure- he is not as stressed this time because the bronchoscopy went well for him. After today's procedure, we should be able to treat the problem and Jeremy should be feeling much better fairly quickly. After that, he will have to go back to po medications and start eating again (see entrys of about 2 weeks ago- we are coming full circle :)) I'll let you know more as soon as I do- probably tomorrow. thanks for visiting, have a fun day out there in the free world! Thursday, May 20, 2004 0:07 AM CDT Just when things are looking bleak- a good day comes along! Jeremy's fevers have left the building. He now has burning feet- every so often since yesterday he is brought to tears because of the pain in his feet. It may be a side effect of some of the medication. While easily treated, it really freaks him out. He only threw up a few times today and is keeping his meds down. He got up and walked around the nurses station today and it only cost me one package of hot wheels. No infections, so the antibiotics will be decreased. Best of all- he's feeling better. He was talking and joking today! We are looking forward to more of the same tomorrow. Thanks for stopping by! Tuesday, May 18, 2004 9:36 PM CDT Today's news is - no news yet. Jeremy has undergone 3 chest x-rays, 2 CT scans of his chest and one of his abdominal area, a nasal wash, numerous cultures of both his blood and feces, and a bronchoscopy- and nothing has presented as the cause of his fevers or the nodules in his lungs. The nodules are going or gone away, leaving a "ground glass" consistency, which is more typical in the BMT patiants, and possibly an indicator of graft vs. host disease. His rash remains, but is not bothering him. His fevers continues to show an overall trend of decreasing although they are not gone. His stomach continues to bother him- he has dry heaves and terrible heartburn due to the acids working on his stomach. He refuses to take Prevacid, which would make short work of the heartburn and make him feel much better- which leads to the real topic at hand for me. All of the above is good news, and possibly will result in a peeling away of antibiotics and a discharge in the next two weeks. The not so good news is that I think Jeremy has had it! Now that we know more about what his problems aren't, and they are getting better, he needs to go back to work. He has to eat and be able to take his meds p.o.. He has been great at taking his immunosuppressive drugs so he doesn't have to get his picc line back in, but no others. He is also running the risk of pneumomia because he is not walking or sitting up- so the focus is shifting towards putting him to work again. All of us are running around helping him recover and beat this thing as much as we can, but the time comes where we can't cross the finish line for him. He has to help himself if he's ever going to get out of here. I'll tell ya- I'm starting to wonder if we will have Christmas in the hospital this year :(. We have been fighting a lot these last few days. Many of you are probably wondering what kind of terrible person I am to be fighting with this poor child- but I tell him that if I supported him just laying there in a dark room I wouldn't be a very good mom. So instead I ask him nicely to go for a walk and when he says no about 3 times or so, I fly off the handle - good mom- not! So I'm feeling a little insecure in my caregiver status today- tomorrow is another day! Thanks for stopping by, I'll try to be more upbeat next time. Monday, May 17, 2004 2:45 PM CDT Hello everyone. Well- we don't have news back yet from this morning's CT scan, but a chest x-ray on Saturday looked better according to the Dr. so the CT scan should be better as well. It looks like Jeremy has graft vs. host disease, he has the rash and his CBC looks a little off. Best case scenario we can expect really bad diarrhea and the rash. The disease can be very serious. In Jeremy's case, they wanted him to get a little of it because of the additional burden of leukemia. The idea is that the new bone marrow will fight the leukemia. So good news? Bad news? Pick one. I just wanted to update real quick so you all would know we're doing o.k up here. Thanks for checking in on Jeremy today. Friday, May 14, 2004 10:16 PM CDT Hi all- well, they didn't find anything in the CT scan of Jeremy's lungs yet, although they are still growing cultures to make sure. Because they haven't found anything there, they did a CT scan of his abdominal area today, but don't see anything there either. This is all great news- except Jeremy has continued with constant fevers which are getting hotter by the day and stomach pain. So conclusively there is something going on with him but we don't know what it is. This is a glass half empty or half full moment. . . I pick half full, I guess. All this may be due to engraftement, which means it is a necessary evil of his body healing. I went to the apartment today and took a long, hot bubble bath, then Jessie and I went to a $1.00 movie and found this incredibly cool place to roam around in. Some of you are aware of it probably- it's the Sugar Hill District. There is an eclectic mix of old and new places to shop and browse, plus an uncrowded 10 screen dollar movie theatre, which I am scoping out for when Jeremy is out of the hospital. Well, I'd better get back to Jerm, I've been gone most of the day. I sure had fun with Jessie today. Ray stayed here. He said he was pretty bored, but he and Jerm had a nice day by both reports. Thanks for stopping by- I'll update more when I have more information- Bye Wednesday, May 12, 2004 8:59 PM CDT Ok- so maybe things were going too well! The CT scan showed that Jerm has small nodules throughout his lungs. It could be a viral, bacterial, or fungal infection. They don't know what it is, but it is very abnormal. Today Jerm underwent a bronchoscopy (sp?). He was in the OR and under general anethesia for the procedure, which is to stick a tube down his airway and into various parts of his lungs to do a saline rinse, then suction up particles of whatever is in there to send to the lab for testing. We don't have any results from that yet, but should know more tomorrow. The Docs don't seem overly alarmed. My first thought was a secondary cancer, but they have assured me that it doesn't present anything like that. As usual, Jeremy is atypical in that he has no other symptoms like congestion or cough and runny nose. He has the tummy pain and the low grade temperatures only. So- they have no idea what it is today. This will delay discharge, as he's not going anywhere until this is identified and fully treated. As we have not completed step one yet- I'm thinking we are here at least until next week. God willing it isn't anything major. I'm a little scared. Some days it's like this will never end. . . ! I called Ray late last night and told him about it and he packed Jessie into the car (it was voluntary on her part too!) and dashed down here to be here for Jerm. It's funny, under regular circumstances if a child were having an operation, chances are some family or friends would be there etc.- Jeremy has gone through so much that we just kind of roll with it, so I didn't even expect anyone to come. In fact, I didn't let anyone know about it. I really thought about that. It isn't fair to Jeremy that I have kind of stopped acknowledging the signifigance of being in the OR because we have been there so many times. I need to remember that every step of the way has an impact on him, and there are days when just me and him isn't enough. So- they are here until SUNDAY! YEA! As always, thanks for checking on Jeremy today- I will update with the results as soon as I know more. Good Dreams! Tuesday, May 11, 2004 4:45 PM CDT Hey! Another report of Jeremy continuing to do well- yea! He has been having low grade temperatures; he had another one last night. I am pleased to report that he slammed his evening pills in less than five minutes last night with no shakes, nausea, and only a borderline temperature. I think discontinuing the amphotericin (sp) really made a difference. He has not been feeling well this morning, his tummy was upset and painful- but seems to be feeling much better this afternoon. And. . . he took his morning pills like a trooper despite not feeling well- and they stayed down! They take chest x-rays every Tuesday and today Jeremy's looked different. The physician's assistant described it as not alarming or identifiable, but different, kind of a different consistency (think gunky). This is odd as he has not congestion or other symptoms that could be associated with the way his lung looks (this is my interpretation of what was said). It could possibly be viral, doesn't look fungal. . . we went and had a CT scan to make sure it's nothing major and hopefully to identify what it is, if anything. Maybe the mysterious it is contributing to the painful tummy and the mild temperatures. The Docs said this morning that if things continue to go well we may be discharged by the weekend. So cross your fingers- Thanks for visiting! Monday, May 10, 2004 7:05 PM CDT Thanks for coming to visit today! Jeremy continues to do very well. He has had two fevers in the last couple of evenings and some nausea. I have thought that it has to do with one of the medications that he is being given, so we have discontinued the medicine to see what happens this evening. Jeremy's counts remain high enough for discharge, so we just need to ensure that the fevers are not caused by any infection. There were blood cultures done and so far they haven't "grown" anything. Jeremy also got his pic line out today. They just pulled it out- it's about the length of his arm and looked like a spaghetti noodle coming out of there. We saved it in case we want to show it off later. Jeremy said it didn't hurt, but it was a little nerve wracking to watch it sliding out of his body! The reason he got the extra line out is because he is doing so well taking his pills. He took 6 this morning and kept them all down. He has 7 this evening, and I think now that we may have determined what is causing the nausea, that will go better. He went outside today for about 2 minutes. It was really windy and dusty so we came in more quickly than we had planned. When we got back in I stopped to talk with someone and he went and hid under the nurses desk so I didn't know where he was. I thought they were all teaching me a lesson because I never make him wear his identification band! It is nice to see him play around like that. Even though I knew he couldn't be lost, I panicked a little on the inside. I expect to be discharged some time this week. The only thing left to tackle is him eating- that kid is at risk for some real eating issues as an adult. When he is sick I'm on him to eat. When he is eating, I'm on him to watch what he is eating. I need to find the middle on this one! Today I ran into another mom on the caringbridge pages in the ICS unit. Please stop by and say hi to Aizee and her family- and think good thoughts. Sounds like they should be in and out of here quickly and carrying on with being done with this whole mess. Have a good day! Sunday, May 9, 2004 11:20 AM CDT JEREMY HAS ENGRAFTED! His ANC yesterday was 900, and today is 1400. His platelets continue to increase as does his WBC. Since this started last year, Jeremy has never recovered counts at this rate. That is because he couldn't, but Jessie can. The gift she has given is more clear each day as he recovers. My older brother Hjalmer won the engraftement pool- but Jeremy has already comandeered the money. I just wanted to share this fabulous news. Otherwise, thing are going along pretty uneventfully. Ray and I are going grocery shopping to stock the apartment today, and Jessie will stay and sit with Jerm. Hopefully they will have a nice visit. I stayed with her at the apartment last night and Ray stayed at the hospital. He was pretty grumpy this morning because you get woken up frequently throughout the night here. I've gotten so that I can sleep through a lot of noise. Happy Mother's Day! Friday, May 7, 2004 8:59 PM CDT Hello all! Jeremy's counts continue to steadily increase- his ANC is 400 today. He is trying so hard to take his pills and keep them down. It is a frustrating struggle for him, and I have to keep pushing and pushing - whew- this is a hard time. He will only try for a few of the nursing staff and the rest of the time it can only be me. We've gone rounds a couple of times, which usually ends up with him vomiting. Go Mom. He ate a turkey slice today- a veritable feast! Ray and Jessie will be coming up in the morning to spend the weekend with us. Good news is that Jeremy has not developed any complications and we are still headed briskly down the right track. He has a lumpy/bump near his elbow that appears to be getting bigger. I am kind of worried about it, but the Docs don't seem alarmed. They think he may have bumped it. I am going to make them watch it every day because I know he didn't bump it enough to make that big bump with a bruise around it. Believe me, I would have heard about that! Let's all hope that I am crazy and they really do know what they are talking about ;). Well- Happy Mother's Day to all you moms out there and the loved ones that make our many jobs worthwhile!
Wednesday, May 5, 2004 11:48 AM CDT Good Morning! Well, Jerm's on day 20 today. His ANC is at 300, which is going up, up, up. He continues to do well, although he is throwing up more frequently. No infections, fevers, or other problems! YEA! Yesterday I told him he was too onery and is not having problems because God didn't want to push it. He thought about that a while and very seriously told me I might be right. Looks like discharge may be early next week. He is taking one of 8 medications by mouth right now, but is still not eating. He is talking about food though, which is a big, big, change. I have to admit that I am getting a little squirrley- it's time to GO! So- pretty uneventful today. Thanks for checking on Jeremy. Have a wonderful day in the sun! Monday, May 3, 2004 11:31 AM CDT Day 18! Jeremy's ANC remains at 200 today, his WBC is about 1100, and wow! his platelets are up to about 35 from 21 ish yesterday. Sorry about the lack of precise information here- I am downstairs and I forgot the numbers already- uh oh. Jeremy continues to feel pretty good. He sleeps until noon, watches TV or plays video games and rests off and on. We have a reading time each day so that we don't forget how, but that's it on any academic pursuits unless you count Discovery Channel- yeah, let's count that. You can learn a lot about motorcycles and family dynamics on West Coast Choppers! He is not engrafted yet, but continues steadily towards it. Today he will be given one of his medications in pill form to get started on that. Also today we will push at least drinking- history shows that this will be an epic battle until it is on his terms, which would keep us here longer than necessary. We have our work cut out for us today. We got the apartment rented and Ray enjoyed staying there this weekend. No Deb, there are none of the services you listed that we should have. . . but there is Direct TV. Ray has reported that this makes up for all evils in the world with at least 50 channels, some of them movie channels! And I was worried about being away from home and work for so long- now that I have Direct TV- it's all better :). Well, that's all for today- hopefully my reports will remain uneventful, as that means things are steadily improving for Jeremy with no complications. I can't tell you all enough how wonderful it is to open up the guestbook and see your comments and well wishes. We miss home. We try not to miss it too much, as it wouldn't do anything but make us feel worse. Hearing from every one at home and even across the country and the world is the highlight of my day. Have a great day- we are going to! Friday, April 30, 2004 11:58 AM CDT Day 15. . . and ANC OF 100, with a WBC of .8- this is very big news. Jeremy is well on his way to engrafting, and may be at that ANC of 500 tomorrow or the next day. Two days of 500 or above, eating, no fevers, and taking medications by mouth and we are so outta here. He's not feeling all that great- the Dr. called it the engraftment blues. The newly forming white blood cells are being formed and looking around this body they are in, which is compromised in a lot of ways, and they want to get right to work! Their activity may result in flue like symptoms- but this means that things are working. Jeremy says that something big is happening today. He doesn't know what it is but for some reason he thinks that he is going to get sicker today. Maybe he just feels crappy. Also with Jeremy, he refuses to get excited about the progress he is making because he learned right away when this all started not to get too excited about anything. The disease and treatment is so unpredictable that he was often disappointed, so he doesn't buy anything until a few minutes after it has happened. Whooey- trust issues coming down the pike! Ray will be coming early today- we didn't tell Jerm so we can surprise him. Jessie has decided not to visit again this weekend- while things progress so nicely with Jeremy, my mind is often with Jessie. I worry that she will not weather this family crises safely, and that her choices will have a lasting impact on her own future and her relationship with Jeremy. So. . . when a door shuts, find and open window and a new problem is lurking there. . . oh wait a minute, that's a new "opportunity". Sorry. Thanks for stopping by- as always, the support helps us enjoy each day. Wednesday, April 28, 2004 11:28 AM CDT Day 13! No fevers, no infections, liver function normal, rare vomiting. . . we are so grateful to have pretty much nothing to report. We are waiting for counts to come in and then we will be moving into a Ronald McDonald apartment. I went and looked at it yesterday. They are really nice. There is a kitchen and dining area and living room with a fold out bed, plus a bedroom with one queen and one single, and a bathroom with a BATHTUB. I can't wait to cook and clean our new temporary home. Jerm says he wants his first meal to be hashbrowns and eggs- that's his favorite meal for breakfast, lunch, or dinner. It is very close to the hospital too, which is a big relief. I'm a little nervous about discharge this time, as we will be far from home and it will be just he and I. Ray has training next week when we will probably be discharged and won't be able to stay any extra days for the transition. I'm sure we will do fine, I'm just a little apprehensive about caring for him so that things continue to go as well as they are! Thanks for visiting- enjoy your day! Monday, April 26, 2004 11:46 AM CDT Day 11! Jeremy had one day of illness, but since then has been doing fantastic! He has had not one fever or any infections. He has vomited off and on, but recovers quickly after some rest. He really couldn't be doing much better. We enjoyed a weekend visit from Ray- he is a party walking and fills our room with fun. He also brought a box of goodies from my co-workers and I want to use this forum to say that a girl couldn't be luckier than me in regards to the thoughtful and kind people I have the honor of working with. It shows in the work that they do daily and it shows in the way that they care for and support each other outside of work if someone needs it. They will read this and roll their eyes, but I mean every word. Grandma and Grandpa are coming to visit on Wednesday, and Uncle Hjalmer and his lovely wife and little guy are coming this weekend. Jessie is also coming with Ray this weekend. What a full week! The social worker is taking me over to look at the new "crib" this week so I can tell Jerm what the Ronald McDonald apartments look like so that he can work even harder to get out of the hospital. We have to wait for him to engraft and for his counts to come up. He also has to be off of IV nutrition and eating, and taking some medications by mouth again. So he has a lot of work to do yet. Thanks for checking on Jerm today- it looks like it's going to be another great one! Friday, April 23, 2004 12:09 AM CDT Day + 7 or Day 8, dependant upon how you look at it. I am sorry to report that Jeremy has started not feeling well and has started today with 5x vomiting so far. He is also fatigued, but remains infection free. So it begins- but at the same time we must always keep in mind that inside his body is working away on a cellular level to get better every second of every day. We can handle anything that comes along if we remember that he is healing all the time. Thanks so much for checking in- it means so much. And, if you have a minute, there are many other families that would love the support if you wanted to visit other kid's caringbridge sites. I don't want to be selfish and keep all my wonderful family and friends to myself! Thursday, April 22, 2004 11:41 AM CDT Day + 6 and counting! Jeremy is doing fabulous. He has had 0 infections or any complications. No fevers, no vomiting, no bad reactions to the gazillion medications. Yesterday he played checkers and chess with me (the chess was quite a spectacle). He has been happy and upbeat, although last night he told me there is an emotional breakdown coming. He doesn't know when, or why, just that it is pending. I asked him to please wait until Saturday for that as then Ray will be here :) Our friends Pat and Becky and Kala are coming to visit tomorrow. They are bringing my car up. I guess I won't be going anywhere, but I can go out and look at it and know I could go somewhere if I wanted to- it's so lame that I am excited about that. Actually time is passing rather quickly. Jerm and I knew we were in this for the long haul- so far we've been in here for 17 days. Oh- he lost his hair- blam! It happens so quickly. He once again enjoyed pulling out handfulls and waving them about. He looked like George Constaza of Seinfeld fame for a couple of days. Today the cafeteria is serving country fried steak and mushroom gravy- this is a big day for me. Lately they have been all about fish - blech! Ray and Jessie have been taking care of things at home- the other day my husband said to me that he really appreciates what I do at home. He said the house is a mess, and it's a lot of work to keep it up- from great adversity comes great understanding! Thanks for checking on Jeremy today- hearing from you all makes the days feel warm and fuzzy. Monday, April 19, 2004 12:08 AM CDT Day + 5 and counting. Jeremy is doing well- his nausea is under control and he hasn't developed any sores anywhere. He also still has all of his hair. He is tolerating things well right now. He is pretty cooperative with the staff and although he is sleeping a lot he is alert and interactive when he is awake. Last night he even laughed out loud- it is a sound that I have sorely missed. Jessie has recovered from her surgery and is back home and at school today. She has a note from the Doc to excuse her from P.E. "until further notice". We'll see how long she milks that out :). Our day is in a routine now- we stay up really late and sleep in, we have a shot (in the belly) at noon, 4 mouthcares to protect from sores throughout the day, a bath (every day no matter how he feels) and dressing changes for both his central line and his pic line daily. Jeremy really enjoys his bath- like his mom. He waits until 9 or 10 at night so he won't be disturbed then soaks for about 30 to 45 minutes. It's nice that he has found something he can enjoy at the end of the day. On the other hand- he hates his pic line. He has never really fussed with the central line, but he's got it in his head that the pic line is more painful- I'm trying to work him through it. The rest of the time nurses come in and out with medications and to check his vital signs. Docs come in and make sure he's o.k.- there is really no privacy, but I'm glad they are watching him so closely. Also we have changed sleeping arrangements. He has moved over onto my plastic fold out couch bed in the corner and is happy as can be. I am in the actual bed- which would be great but I feel kind of out there in the middle of everything. I think that's why he wanted to trade. So- the rest is just waiting...waiting. . . waiting.. . and hoping for continued success. Thanks for waiting and hoping with us. Have a good Monday. Friday, April 16, 2004 3:57 PM CDT Whew! I'm back to update. What a whirlwind couple of days it has been. First- I am dedicating this entry to my beautiful daughter Jessie. As you all know, she has donated her bone marrow to save her brother's life. It sounds very big when you say it like that- doesn't it? Jessie went into surgery at 7:30 a.m. on 4/15/04. The Docs ground through her bone until their arms were sore and poked her about 200 (!) times to obtain the amount of marrow they needed. They had to take quite a bit from her as her brother weighs about the same as she does. The Docs report that Jessie has very strong bones, and they usually want to get at least 5 million cells, hope for 6 million, and got a big 7 million out of her. The bag that they hung for infusion was stuffed full. They also have the same blood type and he needed a transfusion, so in addition to donating stem cells, she donated a unit of blood. She was very nervous going in, and when she came out I could tell that she had a big weight lifted off of her. She is recovering nicely, and has an aura of peace about her. She will be sore for a couple of days, but there were no complications with the procedure. She is already talking about shopping- after all she has done, I have a feeling I'd better take some extra money on this shopping trip! She is still a teenage girl after all, whether she is at peace or not. An interesting note is that if Jeremy ever commits a crime and leaves a drop of blood for evidence, he will have those CSI folks heading the wrong direction as he has female DNA now, because he will have Jessie's. He keeps saying he doesn't want to be Jessie, he wants to be Jeremy. We keep assuring him the changes are strictly internal :). Transplant day was a very big deal for us. The ICS unit gathered a bunch of people, about 20 or more it seemed, and came and sang a happy birthday song to Jeremy and gave them t-shirts and blankets. At this time I was bawling my head off like I wanted to throw up, Jessie was all doped up on morphine and pain pills, and Jeremy was playing his game cube. I don't know what Ray was doing- hopefully he was representing the rest of us! My mom and my good friend Shellie joined us at the hospital on this special day. Tuesday, April 13, 2004 11:39 AM CDT Top o' the morning! O.k., I'm feeling a little goofy today- it will probably pass. Yesterday was a nasty day- Jeremy woke up about 7:30 with severe cramping/nausea that lasted hours. He requested morphine for the pain. This is the first time he has ever requested any pain medication, the first time he has been on any. We don't know what the problem was- probably the radiation starting to eat at his tummy. Those cells that make up the lining of the gastrointestinal tract are are the most vulnerable to the chemo and radiation. This is what causes the mouth, throat, etc., all the way to the bottom- from one end of you to the other- to get sores. He is doing better today, I hope he stays well today. I get to see my little Jessie tomorrow. She and Ray are coming up for the harvesting and transplant on Thursday. Well- that's all to report for today- thank you for checking on Jeremy today. Your kindness is appreciated.
Monday, April 12, 2004 10:27 AM CDT Hello Everyone, Hope everyone had a very happy Easter. We did. Jeremy finished his last dose of radiation Easter morning and returned to his room to find the Easter Bunny had been there. Jeremy got the biggest stuffed animal that he has ever had, a huge black bear that is about 5 and a half feet long. It fills his bed up. He was doing fine the last couple of days with nausea only in the mornings. His treatments were very early in the mornings and today he and mom get to sleep in, so Dad gets to update the page, and be at work early. What follows is two days of Chemo and then the Bone Marrow transplant. His sister and I will be up on Wednesday to start here blood work for the procedure. She is kind of anxious about it, but she will be fine. There will be a few people up to visit him on his Second Birthday (more presents for him :) so he will get to visit with someone other than the immediate family for the first time in a couple of weeks. Anyways, more to come soon. Thanks so much for checking in on Jerm. God Bless. Friday, April 9, 2004 11:01 AM CDT Good Morning! Well, the radiation therapy is beginning to take it's toll on Jeremy. He is experiencing painful nausea and fatigue- things are starting to get tougher. I have really been impressed with the bone marrow team so far. It is clear that they want to make the kids as comfortable as possible while still meeting their needs. With children this ill, it is quite a balancing act. He is down to one pill 2x per day by mouth for only the next three days then all of the medication will be IV. I am glad, as taking pills is a big stressor for him. Ray will be up tonight- Jeremy and I are both excited to see him. Jessie will miss this weekend, which I just realized is a major holiday we won't be spending together- aargh! She is staying at a friend's and will be going to a show (concert in a garage type setting for all you older folks like me). The Easter bunny needs to get to work for both of them! Have a great day and thanks for stopping by. Wednesday, April 7, 2004 10:44 AM CDT Good Morning! Jeremy is doing fantastic so far. The night before last was difficult for him- he was constipated severely and was writhing around in agony. I felt horrible for him and was up rubbing his back all night- until he refused to take the medication that would help him. He's so stubborn with that. Regardless, I told him that he had to help himself too. We got to sleep about 5 a.m. that night, then had to get up for TBI (total body irradiation) at 6 a.m.- that will teach us to stay up goofing off all night:) I am so proud of Jerm. He's such a funny guy. For example, he sat for 2 and 1/2 hours in a sling type get up in the cold with his body strapped in with nary a complaint. Try and get him to take a laxative though! He really picks what he will do and what he won't. What I see is that he always picks the very important things that have to be done, and fights about those things that don't seem as vital. The nurses probably don't like me much, because if he gives us a choice that he will take a prevacid to coat his stomach for comfort or an anti-fungal that may help save his life- I'll pick the anti-fungal every time and the previcid can wait until another day. Yep- our nurses are earning their pay wtih us! They probably draw straws every shift change to see who has to deal with us! Monday, April 5, 2004 7:02 PM CDT Hi everyone. I am writing to you from Jerm's hospital room. They have finished the new unit and they have these flat screen TV monitors that are a computer monitor too with one of those floppy keyboards and a mouse. They are dvd and cd players too- it will take us a while to figure out how to use it all-but we have some extra time on our hands. As of today, Jerm has officially relapsed - leukemia again, along with the myelodysplastic syndrome. Jerm has his first total body irradiation at 6 a.m. in preparation for the bone marrow transplant, which is happening as scheduled. There are still concerns abou t his liver- Well- talk to you all tomorrow. Thanks for visiting.
Saturday, March 27, 2004 6:15 PM CST What a week! We went to Primary Children's on 3/29/04 to begin the pre BMT work. Things appeared to be going as planned- until- first Jeremy's billyrueben in his liver was elevated- concern! A CT scan was completed to rule out any lesions on his liver and there were none to be seen. We don't know what it means, yet. Maybe nothing. Then the pathology of his bone marrow aspirates showed about 3.5 percent blasts, but the cytology showed about 25 percent blasts with some now circulating in his blood instead of being contained to the marrow- this is new. The great debate is if Jeremy has relapsed with leukemia, he may need to go through an induction phase of chemotherapy prior to going into a transplant. The problem is that Jeremy's counts are bottomed out due to the myelodysplasia, so he might never recover them, and he might not go into remission any way. But. . . the "good news" is that because myelodysplasia acts so funny in the body, the many doctors aware of and consulting on Jerm's case can't really tell if the cells are cancer or irregularly formed new blood cells. So the conclusion seems to be that we are going to go to transplant next Tuesday. We go to Salt Lake to meet with the BMT team on Monday to get the final numbers and recommendations and go from there. And. . . he picked up a staff infection which was caught through blood cultures this week, so is on IV vancomyacin- thankfully at home. Today we are going to a friends baseball game, then to some movies that Jerm will be missing over the summer. He's not feeling the greatest, he has no appetite and the line placement (this Thursday) continues to bother him- much more than the first one did. I'm a little concerned about this line placement- I can't remember if the last one was similiar because he had just been diagnosed and I didn't know what I was doing- I can't remember a lot about that first week with all the foreign languages and upset. We have all learned so much- counts, brovic, white count, ANC, bone marrow aspirates, lumbar punctures, blasts. . . etc. At least I have an understanding of all of the terms now. Even the slang like, amphoterrible- that's a good one. Well, thanks for visiting. Thanks also for all the well wishes in the guest book- it means a lot to all of us.
Friday, March 12, 2004 12:06 AM CST Hi. What a blur! This is just a quick not to let every one interested know that Jerm is going to Bone Marrow Transplant within the next 3 to 4 weeks with his sister as a doner. The story is too long for the time I have to write, and we will have more accurate information after our consultation with the bone marrow Docs on 3/17. I just appreciate folks caring about Jerm and keeping track and I wanted to let you know. One big, important question I can answer though- they scheduled it around his trip to Disney- no worries, we are still able to go on what promises to be the coolest vacation ever! Thanks for stopping by- I'll update as we know more and we have time to sit still for a minute! Friday, March 5, 2004 8:01 PM CST No new news really today- Jerm had a CBC yesterday and his platelets are still at 22, his WBC at 1.3, and his ANC to 582. Low, low, low.. .So he can't do a lot of playing, or anything he enjoys really- he is really an active kind a guy. Of course the weather is getting nicer right when he can't do anything active- I'm not trying to be negative, I just feel bad for my baby. He is feeling o.k., just some stomach aches and head aches here and there. He caught a sniffle, but seems to have completely recovered. I think he is a miracle- how does someone with a compromised immune system fight off a cold so quickly when everyone else in the house is still sniffy?! He missed a couple of days of school, and a lot more days of homework (he's a little manipulator :)). We are doing CBC two times per week now, and have an appointment for another Bone Marrow Aspirate on March 29. That is the Monday after we get back from our Wish Trip to Disneyworld. Surely we will know something by then! As always, thanks for stopping by to check on Jerm- Best wishes to all of you every day. Monday, March 1, 2004 9:20 PM CST Well- a mini update. . . Jerm was supposed to have a CBC this coming Wednesday, but we were really concerned about his bruising and pale/yellow pallor. I called and requested a CBC for today instead. So, as I had imagined, his platelets were down to 22. His ANC was 828, WBC 1.8. . . low, low, low "cell lines". Luckily, he is not bleeding or feverish, with no syptoms of cold or flue. He's easily fatigued, but recovers quickly after some rest. What to do!? Wait and watch. We did our CBC locally and the results will be communicated to Primary Children's Hospital, so tomorrow we will talk to them and see what they want to do. It may be wait for now. Or not. Or something I haven't thought of. We'll see and I'll let you know- as always thanks for stopping to visit Jeremy. Monday, March 1, 2004 9:20 PM CST Well- a mini update. . . Jerm was supposed to have a CBC this coming Wednesday, but we were really concerned about his bruising and pale/yellow pallor. I called and requested a CBC for today instead. So, as I had imagined, his platelets were down to 22. His ANC was 828, WBC 1.8. . . low, low, low "cell lines". Luckily, he is not bleeding or feverish, with no syptoms of cold or flue. He's easily fatigued, but recovers quickly after some rest. What to do!? Wait and watch. We did our CBC locally and the results will be communicated to Primary Children's Hospital, so tomorrow we will talk to them and see what they want to do. It may be wait for now. Or not. Or something I haven't thought of. We'll see and I'll let you know- as always thanks for stopping to visit Jeremy. Saturday, February 21, 2004 1:31 PM CST Thanks to everyone who has come by and signed the guestbook- it really means a lot. So- the latest news is, um, no real news. Jeremy's leukemia blasts in January when we did the last bone marrow aspirate were at about 3%- normal. We did bi-lateral bone marrow aspirates and a biopsy on 2/17- well first his CBC wasn't so great- his ANC was down to 500. The WBC, RBC, platelet count, etc. were all pretty consistent with the week prior- low, but not decreasing. The results of tests were that the leukemia blasts have increased to 5% and there are some abnormal, but not cancerous (?) cells observed. Because there are parameters to diagnosis any illness, Jeremy is not in relapse at this time. The Docs are saying he has to hit 10% blasts or get sick before anything can be done to treat him. Because of the AML and the already administered chemotherapy course, Jeremy will be having a bone marrow transplant with an unrelated doner if he relapses. Because of the high risk of the transplant, the Docs don't want to jump the gun. So the plan is to have a CBC every other week, then to do another bone marrow aspirate in 6 to 8 weeks. I asked Dr. Barnette about time frames and he thought we would know something and be taking action if necessary within 3 months or less. So, if I were optimistic I'd say we are living every day to the fullest and isn't it great that we have time to play and plan! I think we can do that- sometimes I forget about the thing, but then like today, Jerm was so tired he pulled himself out of his basketball game- Oh yeah:( Thursday, February 12, 2004 10:08 PM CST I am glad I found caringbridge for many reasons while going through this. The reason I am glad today is because I am scared and sad and unsure and this is one place to go where these feelings are fully understood. Jerm's counts continue to drop, his ANC is at 1060, platelets at 32, WBC at 1.9, etc.. We will be going to Primary next week and he will have two bone marrow aspirates, one on each side, and a bone biopsy. He's not had a bone biopsy before. They've decided not to do a lumbar puncture. They figure they will be able to see enough with the other. They are still offering other explainations like sluggish count recovery or a mysterious no symptom viral . . . something. Jerm told me last night that he is relapsing, that he can feel it and that he'll say it because no one else will. I told him he wouldn't feel it- then went over the different possible causes suggested by the Docs. Jerm is high risk and there are red flags all over the place- headaches, stomach cramps, sporadic fatigue. We are just taking it easy and not jumping to any conclusions until we have test results- we could all learn from Jerm- the kid is cool as a cucumber. We share everything about his illness with him with the exception of the low percentages attached to AML. He has mood swings, but that's about the only way to tell that he is anxious. I think I'd be having more than a few mood swings if I were in his shoes! In fact, I can top his mood swings on a good day! The more worried we get the more updates you'll see- thank you all for being here.
Thursday, February 12, 2004 10:08 PM CST I am glad I found caringbridge for many reasons while going through this. The reason I am glad today is because I am scared and sad and unsure and this is one place to go where these feelings are fully understood. Jerm's counts continue to drop, his ANC is at 1060, platelets at 32, WBC at 1.9, etc.. We will be going to Primary next week and he will have two bone marrow aspirates, one on each side, and a bone biopsy. He's not had a bone biopsy before. They've decided not to do a lumbar puncture. They figure they will be able to see enough with the other. They are still offering other explainations like sluggish count recovery or a mysterious no symptom viral . . . something. Jerm told me last night that he is relapsing, that he can feel it and that he'll say it because no one else will. I told him he wouldn't feel it- then went over the different possible causes suggested by the Docs. Jerm is high risk and there are red flags all over the place- headaches, stomach cramps, sporadic fatigue. We are just taking it easy and not jumping to any conclusions until we have test results- we could all learn from Jerm- the kid is cool as a cucumber. We share everything about his illness with him with the exception of the low percentages attached to AML. He has mood swings, but that's about the only way to tell that he is anxious. I think I'd be having more than a few mood swings if I were in his shoes! In fact, I can top his mood swings on a good day! The more worried we get the more updates you'll see- thank you all for being here. Friday, February 6, 2004 10:10 PM CST Hi everyone- I just got home from roller skating with Jerm- well anyway we were at the skating rink at the same time and we were both skating but as pre-arranged we didn't act like we knew each other unless he wanted money! It is so wonderful to see him out moving around and enjoying his life so much. For those of you who are keeping up with Jeremy, there's a new girl in his life- as far as I can see they skate during the couples rounds and ignore each other the rest of the time. Just like I remember. . . Jeremy's counts continue to stay low, his platelets are at just 41, down from 45. His WBC and ANC are pretty stable, at 1200 at least his ANC is over that 1000 mark. We are doing a weekly CBC- still hoping to see an increase. If not, they pushed it back a week to 2/18, but we will be doing another bone marrow. I guess they want to be sure that if anything is there they want to catch it by waiting until there is something to see. So far there is no explaination for the low counts. He hasn't been sick at all, no runny nose, fever, etc.. He's tires a little easier these days, but he is eating us out of house and home- no decrease in appetite noted for sure! He has a basketball game tomorrow and everyone is wondering why I would let him play instead of making him "rest". I figure the cancer will do what it is going to do regardless of whether he plays in the game or not. The low counts are a concern, of course, but he is already covered in bruises due to the low platelets, and we are right by the hospital. I don't know if I am right and I don't want anything bad to ever happen to him again, but I think to not let him do the things he enjoys so much if it is at all possible is a great disservice to him. When he gets through this and is playing college something, he will be glad his mom didn't play it so safe that he couldn't live his life. I hope! I wish some one had all, or any, of the answers about how to handle all of this. I wish the best for you all- thanks for checking on our boy- we love him so much and we are so proud of him. Friday, January 30, 2004 7:12 PM CST Wow- an update! I have time to update because the toilet overflowed and all the towels are on the floor and I have to wait for the laundry in the dryer to get done so I can move the laundry in the washer over and then wash all the towels. Our dryer takes two cycles to dry anything completely and you have to remember to prop a chair up to keep the door from opening- this leaves me free for a while. Jeremy's counts are staying low- his platelets were down to 45 on Wednesday. He's still bruising and he picked a small scab last night that required a number of paper towels and three band aids to stop the bleeding. We are just taking each day- hoping to see his counts go up or to find out what is causing the problem. We have another CBC next Wednesday and we are already scheduled for another bone marrow aspirate in Salt Lake on 2/15. We can cancel that appointment if his counts improve next week. So it goes. . . Friday, January 16, 2004 9:39 PM CST Just some great news- but first the story behind it. Jeremy's counts continued to fall, on 1/12 his ANC was down to 1450, platelets at 67, with his WBC and HEM staying stable. On 1/15, we went to Salt Lake to Primary Children's Hospital and had an exam, a CBC, and a bone marrow aspirate. His counts have continued to drop gradually, his platelets were at 57 and his ANC went down to 900. Last time his ANC was 900, we were worried about him going to school! The test results are that there is no evidence of cancer- the problem is that there is no explaination for the dropping counts. It could be a virus, but he hasn't been ill since last month with the flue. The Docs are very optimistic that we are not looking at a relapse, but they don't know what we are looking at. The thing is, when Jerm was first diagnosed, his counts indicated possible cancer, but the bad cells were hard to find, and we actually were sent home with the idea that he may have a virus. Dr. Barnette says that with these results from anyone else it would be a done deal, see you next month, but with Jerm and the way it looked last time, they really want to keep an eye on him. So we will do a CBC here in town on Wednesday and if the counts have continued to fall we will be back up to Salt Lake for futher testing. If they start to increase, what ever it was will have corrected itself and we will be moving on again. I am having a difficult time with this one day at a time thing. A planner by nature, but I am realizing quickly that I won't be able to continue to function living in mortal terror of a relapse each day, week, month, year. I wondered how other parents have done it, live one day at at time, I mean. Now I see that it is a vital survival skill. On the bright side, Jerm's birthday party is tomorrow, and his first basketball game. We will be going bowling for the party, then having a sleep over. I will be paying dearly for a recent parenting error tomorrow night! We started out with 4 guests to sleep over. The number of guests increased in direct proportion to my level of concern about Jerm's health. We ended up with a total of 9 guests, 10 year old boys, which is like 90 regular guests! Thank you all for stopping in to check on Jerm, it really means a lot to us. Saturday, January 10, 2004 8:28 AM CST Today is another wonderful day. Not for any reason other than we are together at home and we love each other so much. I have been remiss in updating Jeremy's page- and I apologize. I remember when Jeremy was first diagnosed and I scoured the caringbridge pages looking for children who were doing well. Even though is was sad that I found only a few- I discovered the support and faith in these pages. Jeremy is doing fine in school- getting caught up. He doesn't like spelling, so we are really practicing those words! He started basketball last week and his first game is next Saturday. I am excited that I will be assistant coaching. I used to coach Jessie's teams when they were younger, but I didn't know how well I'd do with a pack of BOYS! Also next Saturday is Jerm's 10th birthday party. We are going bowling and having a sleep over. Our holidays were fabulous- it seems like every day is so bright and special days just sparkle. Not to say that we don't have our usual trials that life deals us all, but that they aren't so important as they used to be. We have taken Jeremy to the Dr. on the 7th and the 9th as he has been bruising again. His WBC is 3.8, his ANC is 2090, his platelets were 71- down from 95 two days ago. Our Dr. is not really saying she has concerns, just that with his history we have to watch him closely. We have a follow up appointment up at Primary Childrens Hospital on 1/15/04- I continue to believe that he will remain in remission. He has been in remission since July, 03. The Docs say that with AML, a relapse would happen more quickly rather than later. Sunday, December 14, 2003 2:22 PM CST Hello everyone! Just a quick update- Jeremy has recovered from the flue with no complications. He still has a little cough but that's it. We went in for a follow up appointment on 12/11 at Primary Children's and all of his counts were fine. His platelets were a little low, but they thought that could be caused by is recent bout with the flue. We are all in a rush working and getting ready for the best Christmas ever! Thanks for coming to visit us today.
Saturday, December 13, 2003 0:08 AM CST Hello all, I just wanted to update the page and let everyone know how Jeremy is doing. We took him to Primary's on Thursday the 11th. He is doing great. His bloodwork came back fine. The only thing was that his counts were a little lower than they should be, but that was probably because he was sick for the last few days. Other than that everything is good. He is still doing well in school. We will head back next month for another checkup. I will try to keep this page updated as much as possible with being so busy. Thanks to all for checking in on little Jeremy. God Bless. And I would also like to tell everyone Merry Christmas, and Happy New Year. Sunday, December 7, 2003 11:49 AM CST Good Morning! I want to thank everyone who is coming by and signing Jeremy's guestbook. I have missed checking on all of the kids every couple of days. My husband and I are both back to work and the kids are back in school- I swore I wouldn't get so caught up in all of that when we got back to normal. . .it's life- it takes you by storm one way or another. To top it all off, Jess, Ray, and now Jerm have come down with this flu we have here. Of course we worry so much about Jerm having it- but so far he is running a low grade fever, has a nasty cough/sore throat, and is miserable but nothing too terribly bad. He is still sleeping and has a little bit of an appetite. We will be watching him closely. I have heard that our Physician's Center is turning folks away because there is nothing they can do about this flu. I'm confident that they would see Jerm though, if we needed them to. He has a follow up appoinment at Primary Children's on Thursday- we may have to reschedule that one if he doesn't get a lot better. My goal is to come by and check on everyone within the next couple of days-- I just want you all to know we think of you often. Thanks for seeing Jerm today-
Saturday, November 29, 2003 8:22 PM CST False Alarm- I took Jerm to the Dr. today did a CBC- his counts are all fine- everything is fine. Jeremy was pretty upset- he kept telling me on the way that it is over and why don't I let it go. He asked me today when a relapse could happen- like in a year, or in a day or a week. I almost feel like I was wrong to take him in. I didn't mean to scare him. Well- thanks for checking on Jerm today. Saturday, November 29, 2003 12:15 AM CST Happy post Thanksgiving to all! We got the Christmas lights up on the outside yesterday and are planning to get the tree tomorrow. We've been shopping early this year- unusual for us- generally we are running around Shopko on 12/24 confused about why all the good gifts are gone :). Jeremy is bruising- he had two big ones yesterday and three more on his knee today. I am taking him in to our local Physicians Center for a CBC- he hasn't had one for two and a half weeks. When you think of Jerm today- please hope for the best. If this is happening- he hasn't had enough time yet. Thanks for checking on him during this busy holiday time. Wednesday, November 19, 2003 10:14 PM CST Hello- I just wanted to quickly update everyone. Jeremy is doing fantastic! He is going to school every day the whole day. He comes home, does his homework, showers, eats, plays, has friends over and vice versa, cleans his hamster cage, plays video games, watches TV, wrestles around, jokes/fights with his sister, antagonizes the cats, visits with the dogs, and goes rollerskating. He is preparing to sign up for basketball and will be starting back to martial arts as soon as we can fit it in. In short- things are pretty much back to normal, with one exception. Normal is more precious than I ever imagined it would be. No matter what happens in the future with Jerm's AML, these times will not be under appreciated or taken for granted. We will be going to Disney World over spring break for his Wish Trip- it will be the best Spring Break ever for a lot of reasons- free trip is one, but just enjoying eachother in that exotic (for us) setting is something to look forward too after this long summer. None of us have ever been to Florida before. It's still pretty chilly here in March, so we will be getting head starts on our tans. thanks for coming to check on Jerm- Friday, November 14, 2003 7:32 PM CST Thank you so much for checking on Jeremy and for caring about him. I wish you all could meet him- he is the coolest kid. He had his broviac removed on November 12,2003, and had his last intrathecal chemo. He remains in remission. We have an appointment for follow up every four to six weeks up in Salt Lake. He has to take Diflucan and Axcyclovir for the next two weeks only, and Septra for the next six months. No more dressing changes, no more flushes, no more home health (we will miss them though- they have been wonderful). So we did this thing from May 30 to November 12- 5 and a half months of . . . this. So we are done and we have other things to attend to. In a few minutes we are off to the skating rink- right now the house is being utilized for practice. We will update soon- today is another big hug for every one day! Saturday, November 8, 2003 2:44 PM CST It seems like things are winding down around here. Jerm has his last appointment in Salt Lake next Wednesday. He will have one last lumbar puncture and have his broviac removed. He will have a CBC drawn locally in about 6 weeks, and we will go back for a checkup in Salt Lake in about three months. I can't believe this is coming to an end. I have learned so much about myself, my family, and the kindness of others through this experience. As you can imagine, we have big plans for next week. On Friday we are off to Skateland. The only way Jerm would let us stay is if we act like we don't know him. Most people there will know that we know him if there are problems :). On the weekend out comes his bike- snow or shine! We are still awaiting the results of the bone marrow aspirate from November 5. It is tucked way back in the back of our minds. We are going to have to learn to tuck this away so that we will be as vigilant as necessary, but not trying to live with that whole "waiting for the other shoe to drop" thing every moment. As always, thanks for taking time out of your day to check on Jerm!
Saturday, November 8, 2003 2:44 PM CST It seems like things are winding down around here. Jerm has his last appointment in Salt Lake next Wednesday. He will have one last lumbar puncture and have his broviac removed. He will have a CBC drawn locally in about 6 weeks, and we will go back for a checkup in Salt Lake in about three months. I can't believe this is coming to an end. I have learned so much about myself, my family, and the kindness of others through this experience. As you can imagine, we have big plans for next week. On Friday we are off to Skateland. The only way Jerm would let us stay is if we act like we don't know him. Most people there will know that we know him if there are problems :). On the weekend out comes his bike- snow or shine! We are still awaiting the results of the bone marrow aspirate from November 5. It is tucked way back in the back of our minds. We are going to have to learn to tuck this away so that we will be as vigilant as necessary, but not trying to live with that whole "waiting for the other shoe to drop" thing every moment. As always, thanks for taking time out of your day to check on Jerm! Sunday, November 2, 2003 7:19 PM CST This Halloween was very special to us. Every year, we carve pumpkins and decorate with homemade decorations. We take Jerm and as many of his friends as we can gather trick or treating at the "rich houses" for as long as they can go. This year was a little different- we didn't have time to carve pumpkins so they are still sitting on the front porch. We didn't make decorations, but that may be an age thing this year. We did, however, gather up friends and go trick or treating. Jerm didn't last as long, or go as hard, and he's absolutely not into his candy like he usually is (this is actually a good thing!) The reason this Halloween is so special is that we didn't know what our lives would be like when Halloween came around this year. Things have changed signifigantly, of course, and some of those changes are difficult to deal with. When I went back to work I saw my picture of the kids from last Christmas and I started to cry because my big strong boy is pale, thin, weak, and just growing in hair. Then I thought about how very lucky we are to have him here to be a wizard on Halloween. Every holiday, every day, is so special. I am so proud of all of the children and families that are called to arms to face cancer.
Monday, October 27, 2003 1:49 PM CST Finally an update! We have been so busy with work and school. Jeremy's ANC dropped to 972 last Thursday, with platlets down to 51. We were all holding our breath hoping that his counts would head back up on thier own without having to restart neupogen and . . . viola- today his ANC is at 1101, and his platelets are at 151! All on his own. So now we will have 3 lumbar punctures at Primary over the next three weeks- the first is this Wednesday. When those are finished, Jeremy will be OT- OFF TREATMENT!
Tuesday, October 21, 2003 9:43 PM CDT Hi all- thanks for coming to check on the Jerm! He went to school today for the first time since last May! He was able to stay all day. Ray went with him and helped in the classroom so that he could be there just in case. From what I am hearing, Ray spent a lot of time playing with the kids. Ray has always been a favorite among Jeremy's classmates and friends, so I think that everyone had a great day at school today. Ray reports that Jeremy walked all the way around the field at P.E., and that he was outside visiting every recess. He also ate lunch, and got along great with all of his old buddies. Oh. . . and he did good keeping up with the schoolwork too. I wasn't so much worried about that small part of school- ha ha. Jeremy was a little nervous about going back- he has been at the same school since Kindergarden, but he said that all of the new kids this year would think that he is a new kid now. He will go to school again tomorrow, then have a CBC on Thursday. We were able to discontinue neupogen injections yesterday because his ANC was 11,000. We are expecting a drop by Thursday, and I think he will need platelets, but he could be back to school by Friday. It is so wonderful to see him happy and hopeful and proud of himself for doing so well today. Also, the Make A Wish lady met with him today, so we should be hearing back from them soon regarding his wish. What a wonderful day for all of us. I hope you had a great day today too! Saturday, October 18, 2003 1:31 PM CDT Hello all, glad you could stop by. Just thought everyone would enjoy an update. Jeremy is doing ok. His counts are up and he is able to go out. We are going to the movie to see The School of Rock and maybe even go to the go-cart place. He is pretty excited about going out somewhere to say the least. He is calling around to his friends to see if someone wants to come over and play. All in all though, he is having a good day today, I hope it lasts. By the way, the cable in his room is working well. God bless and thanks again for stopping by the site. Tuesday, October 14, 2003 1:09 PM CDT Hello all. Just wanted to let everyone know that Jeremy is doing fine. He was a little sick this morning and threw up his first pill, but then like the trooper took the rest of them. He really is special. Mom is back to work so Dad gets to do the whole Mr. Mom thing. It isn't that bad though, I finally realize what kind of work my wife does. Can't wait for Jeremy to get feeling better though, so I can get back to work. LOL. Anyway, he is watching tv now. I can't tell you how tired I am of the Disney Channel. So that is why I am going to put Cable in his room this afternoon. So anyway, that is the update for today. Thanks again, like always for stopping by to see Jeremy's page.
Saturday, October 11, 2003 11:20 AM CDT Hi everyone- I just wanted to get in and update before the page is down- Jerm is home as of yesterday and doing well. It's looking like we may need blood and platelets this weekend some time- but the fever is way gone. Thanks for checking on him- have a great weekend. Wednesday, October 8, 2003 8:27 AM CDT Well, I'm back sooner than expected! Jerm was admitted to our local hospital yesterday morning. He came down the stairs at 6 a.m. to use the bathroom and fell down from dizziness, then vomited. After that we checked his temp and it was 100.1. We called up to Salt Lake and Ray ended up taking him into the our ER after which he was admitted. His fever has been going up and down. They are hitting him with antibiotics. He is not critical at all, it's just that things can go south so quickly. Because he's not feeling too bad he doesn't really get why he can't come home yet. Dr. Reese is waiting for 24 hours with no fever and for the blood cultures to come back for the 48 hour growth. He had a 99.9 temp at 3:30 a.m. with more vomiting so I'm thinking that it will be tomorrow at the earliest before he is discharged. We will see. After this summer the sick feeling that would put most of us in bed for a day is feeling "pretty good" for Jerm. This was at the same time as the big switch, so Ray is staying with him during the day and I am staying the night then going to work. We are hoping that he will be discharged this evening or tomorrow. It is nice to be so close to home and we are hoping that we don't have to go to Salt Lake for anything. I just wanted to update you all- thanks for stopping by. Monday, October 6, 2003 10:44 PM CDT Well friends- it is time for the passing of the responsibilities. Ray has notified me that updating the page is part of staying home and he will be doing it now. I will try to stop and let him take over, but I have to tell you that it will be hard. Taking care of this page has been a very important part of my ability to cope with all that has happened. Not only is it a time to process what has happened or what information we have gotten about Jeremy that day, but it has been so encouraging that people stop by and check on him. I'm so dramatic- it's not like I can't read it anymore! Saturday, October 4, 2003 11:14 AM CDT It is a beautiful fall morning here in Idaho! It is still warm, but the leaves are falling and the colors, even just in the street are so pretty. Jeremy continues to do well- his counts are zeroing out as expected. Yesterday he had .5 WBC, his platelets were 35 with bruising already, and his ANC was 25, down from 1,200 just four days ago. He went to see a local doc on Thursday because he is having problems with his eyes- they are very light sensitive and watery. It does not appear to be from the Ara-C, so he has an appointment with our eye Doctor on Tuesday to see what the problem is. In the meantime, whatever it is seems to be getting better each day. We went to his pediatrician yesterday for follow-up and he is fine. A concern is weight loss- he is at 112 pounds, down from 119 last Sunday, so we will be talking about TPN on Monday. When we started all of this in May, Jerm was a little heavy, between 135 and 140 pounds. He is trying so hard to eat! We are going in for platelets today at 5 p.m.. Jerm started today vomiting- hopefully he will feel better as the day goes on. Actually, all of us have been a little sick with flu like symptoms- we have been so caught up with Jerm that we forgot that it's that time of year. Ray took the day off work today- he has been off during the summer for Jerm but hasn't taken a sick day for himself in 4 months. He has been feeling poorly for about three days now so we decided that in order to kick it he would need to get some rest. He and Jerm are fighting over the remote right now. I'm getting ready to turn that *&^%$ TV off! Jessie has a Dr. appointment on Monday- she found a lump on her neck and hasn't been feeling very well lately- I think it will be fine, but she is a little freaked out with all that has happened with Jeremy so she will feel better after seeing a Doctor. Bad, bad news today- one of our cats is really sick. I took him to the vet yesterday and she didn't know what was wrong- he is vomiting and not eating. He has lost a great deal of weight and we are really worried about him. Our pets are a really big deal in our family, so that's an added stress for all of us, but Jerm in particular. The funny thing is, the vet thought that part of the Kit Kat's problems is stress over Jeremy. Cats are real sensitive like that. And so it goes. . . Thanks for taking the time to stop by- let us know you came, we really like reading the guestbook and meeting new people through it!
Tuesday, September 30, 2003 9:58 PM CDT Another amazing day for Jeremy! It is funny what constitutes amazing these days. I just want to take time to write about how incredible my son is. His whole life has been turned upside down. Granted, he's not in a very good mood about it. I can't say that he has faced it with good humor, or with smiles when times are tough. I think I saw him smile recently when the nurses sang Happy Last Chemo to him at the hospital- of course I didn't have the camera. My Jeremy has faced it head on. He can't go around it, and he can't get away from it, so he is going THROUGH IT! He reminds me of a big rock formation on the Oregon Coast. They are so rugged and beautiful (handsome for him I guess) and they stand so strong against the forever crashing waves. They don't shiver in the cold, or burn in the sun. Those rocks dominate the coast line. There is no way that they will ever fall, even if they are submerged in the ocean some day. Some of the rock is worn away and reshaped gradually, and I think that some of Jerm has been worn away and reshaped by this experience. As with those amazing formations, it only makes him more beautiful to me. Sunday, September 28, 2003 2:08 PM CDT ch-ch-cha-changes! I am happy to report that we are going home today! With the Ara-C and L-Aspar, which is less intensive than the previous chemotherapy there is less risk of complications so we are doing count recovery at home! It was a big surprise-we had geared up for about 2 to 3 weeks in the hospital. Needless to say, we are very excited. I am a little apprehensive about any fevers or problems happening at home requiring us to come back- we have been so lucky to avoid that thus far- but hey, we'll cross that bridge if we come to it! Ray had to call into work today and say he had to come and get us- he had dropped us off with the expectation of coming to visit on Tuesday. He should be here in a couple of hours and everything is packed and ready to load up. So- if all goes as planned, we won't ever be in the hospital again. The rest of the protocol is three lumbar punctures one time a week for three weeks. When Jerm's counts recover, he and Ray will drive up here, get the lumbar puncture, and drive home. They should be done by the time I get home from work. I was planning on going back on the 20th of October, but they way this is working out I can go sooner. They will be glad to hear that- I think. Jessie will be glad that she can have dinner every night and. . .I think she'll be glad to have her mom and brother around all the time again. I will write more later- thank you all for checking on us.
Saturday, September 27, 2003 9:28 AM CDT Good Morning! So- we got up here yesterday at about 2:30 p.m. and found out that the ICS unit didn't have any beds available and we are in the Med/Surg Unit for a couple of days. It's not so bad, they send nurses from ICS over to take care of the kids. For me- I just feel like we are away from our "family" over there- a minor inconvenience. Whoa! Jeremy is really shaken up. He feels really uncomfortable over there. He won't really talk to any staff, even his favorites, and he gave the night nurse a terrible time. He refused to let her do his eye drops and wouldn't talk to her. He wasn't belligerent- but so different. I felt bad for her, as she was really nice! I'm sure that they understand though. So. . . every three hours on the drops was me! Hopefully we will get moved over today. We have started the chemo and so far he has been nauseous but nothing else- it's a good start! Have a great day out there.
Friday, September 26, 2003 10:42 PM CDT Good Evening! Just a quick update- we are back to Salt Lake today- and we've had a long day- I'll write more in the morning. Thanks for stopping to check on us! Monday, September 22, 2003 10:44 AM CDT Good Morning from HOME today. Jerm finished his chemo- we were gone Friday, Saturday, and Sunday. We got home about 11 p.m. last night. Jerm tolerated the chemo o.k.- he has been throwing up more than usual and has lost his appetite already- this didn't happen until the second round last time, so I'm a little nervous for the next batch. The next batch, however, is our last inpatiant stay! We are scheduled to go back on Friday 9/26- Jerm will have the same type of chemo he had this weekend then we will stay for count recovery, which may be 2 to 3 weeks. He is still sleeping right now. He was woken up every three hours around the clock while we were at the hospital for some eye drops that prevent conjunctivitis. You hear about these eye drops a lot on the caringbridge pages- they burn, sleep is interrupted- and the kids are not happy! So he gets to sleep as long as he wants today. He also had to get a new shot this time- it is intermuscular. He got one in each leg at the same time- we had four nurses and me because he hates shots so much and we were afraid he would jerk as this one is supposed to be much more painful than the neupogen. That guy! He didn't move a muscle. He had been so scared about it and HE WAS SO BRAVE- I was again amazed by him- again! So we are just going to kick it at home this week and try to relax before the LONG STAY. There are a lot of changes coming for us in October. God willing, Jerm will be outpatiant only. Ray's last day of work will be October 13 and he will take his Family Medical Leave Act time to stay home with Jerm. I am going back to work on October 20. This is the plan- I keep trying to plan! So we will see how it goes. Thank you everyone for stopping to check on us today. Friday, September 19, 2003 5:43 PM CDT I couldn't wait to tell the news! We did a bone marrow aspirate today and - let me take a minute to settle my stomach- preliminary results are that Jeremy remains in remission. I want to laugh, I want to cry- and I wish I could shake the wariness that I have about things going so well. This is the second bone marrow aspirate that has been clean- Go Jeremy, go Jeremy, it's no cancer day! I'll update more later- we are still waiting to get into our room and start the chemo. I love the world- Thanks for stopping by and caring about us.
Thursday, September 18, 2003 3:43 PM CDT Jeremy and I are headed to Salt Lake tomorrow. His counts today were: WBC- 3.5, Hematocrit- 37, Platlets- 112, and ANC- 1,500. He's ready to go another round folks! It is with mixed emotions that we pack up for another trip to the hospital. This one should be easier because we know that it will be only three days, and Jeremy is usually feeling fine for it- it's just to have chemo administered to get those counts starting to fall before the next round. But maybe because there is an end date, and because he is feeling well, these short stays seem more difficult for him than the longer ones. We are taking a lot of homework, fun reading and art activities, and the Play Station 2. We might stop by a store on the way and get a Zoid or two if we have time in the morning. Jerm has an appointment for a bone marrow aspirate at 12:30 then we'll be admitted. The scheduling piece works out well as we will be back when Ray has his time off in the middle of the week so they can have some guy time before we head back after our four day break. Thanks for checking on us- have a great day! Monday, September 15, 2003 6:59 PM CDT Another plan gone awry- Jeremy's counts dropped and he's not ready for admit yet. His ANC went down to 500 today, and they can't start until he is 1,000. I understand the importance of having his counts where they need to be so that he can continue to withstand all of the chemo as well as he has been, and Jeremy is jacked that we don't have to go yet. I'd just as soon get it all over with, but I'm not the one under the proverbial knife! Plus now I have to help with the Honey Do list that I left for my husband. So we will do another CBC on Thursday and see what Friday looks like. Thanks for stopping by- Saturday, September 13, 2003 9:12 AM CDT Hi everyone! I have been remiss in updating because we have been busy having fun. Jerm's counts recovered the next day- the thinking was that he had caught a little bug and his marrow went to work (like it's supposed to) and sent the soldiers out to battle, leaving no one at home to be counted. He was more fatigued than usual those couple of days. It is exciting that he had soldiers to send and that they did their job. He is not having any fevers or nausea- he's just tired. His appetite is not where it used to be, but it is increasing gradually. Yesterday he put on a pair of pants from school last year and they are falling off of him. I think we will be saving money on school clothes this year. Usually we end up giving away clothes that he has hardly worn, but has outgrown. We snuck off to Boise on Wednesday evening and spent the day Thursday at the arcade, the mall, and Toys R Us. It was a "field trip" for the kids, we covered economics, architecture, geography, and mental and physical health. We all had a wonderful time and it was a much needed break. On Friday I got more done than I have for the last two weeks. I am a social worker and as such have information and training on how to deal with people in crises. It is so different when it's about your own family. I used to work full-time, keep the house running, do lots of kids activities, and still have time to relax at the end of the day for an hour. Now I stay home with Jeremy who doesn't need a whole lot of care right now and I can't get anything done! Where did I go?! A funny thing that happened to Jessie (she's 15) is all of a sudden she is mad because we don't have dinner anymore. All of the changes in our family time have coalesced into not sitting down to dinner like we used to for her. Now, Ray is at work in the evening, Jerm doesn't really eat, I can make due with toast, and Jessie. . . usually isn't home at dinnertime. The answer is to have dinner at 4 p.m.- that is what I am going to try today. Quickly- we will be going to Primary Children's on Tuesday to start our next round of chemo. This is the first set of the last round of inpatiant. We will only be there for 3 days if all goes well, so just Jerm and I will be going this time. Ray will stay home and "mind" Jessie, and catch up on the YARD WORK. And I wanted to take a minute and thank everyone who is leaving notes in the guestbook. We spend a lot of time at home or in the hospital and reading the notes is fun and helps pass the time. Plus I'm not really doing anything else for some reason! Thank you for stopping by today- I hope your day is a good one. Monday, September 8, 2003 7:27 PM CDT Whew! What a busy day today. Since I last updated Jerm had his platelet transfusion on Friday. Saturday Jeremy had a friend over and we went to a movie then out for pizza. Jessie even spent the whole day with us! On Sunday we took it easy. . . then today- wow. We had a visit from Home Health this morning for a blood draw, then Jeremy's teacher for home schooling came today for a couple of hours. That went well- much better than when he and I try to do school work. Then we took all of the work he has done to the school and he saw his classroom and met his teacher. We tried to go when all the kids had left for the day, but we ran into a lot of Jeremy's friends anyway. So here's a funny cancer story- Jeremy's ANC was 2,100 without neupogen support last week so I thought he would be ok to run by the school. While we were at the school, Primary Children's Hospital called and his ANC had dropped to 190 something. So there we are in the school and I am watching his friends hug and shake hands with him, and watching him touch absolutely everything in sight, while this phone call is telling me that he is neutropenic and we have to start the precautions. I also saw his little face lit up like it hasn't been for so long. After that Jeremy felt so uplifted that we went and shot some hoops. Now, that hasn't happened all summer! Well- gotta run- my little nephew is playing in his first soccer game tonight- the Battle of the Tykes! We are all very excited to see this event. Good wishes to all-
Friday, September 5, 2003 12:02 AM CDT Hi everyone- I thought I would share the most up to date news. We went to Salt Lake for a clinic appointment on Tuesday. Jerm had refused to take his medications on Monday due to an upset stomach and abdominal cramping. He still hadn't really eaten or drank anything, which was a huge concern to me. He has lost 6 to 10 pounds over the last few weeks. Anyway, his labs looked great with the exception of a low potassium level. He got some fluids, some nausea medication, and a potassium rider while we were there. Neupogen was discontinued -YEA! All of the IV antibiotics were discontinued. We left there with prescriptions for a potassium supplement, vancomiacin to treat the C-diff, and IV Zofran as needed for nausea. Jeremy told the Dr. he would only take capsules, and the Doc was able to accomodate him, so he has no room to refuse medications now! He can so be darn stubborn! I guess that's the darker side of strong and brave. We stayed overnight and went to the Hogle Zoo in Salt Lake on Wednesday- Jerm had a blast! We pushed him around in a wheelchair all day, so we got a much needed work out with all the sitting that we have been doing this summer. Ray really enjoyed the work out (ha, ha) At one point, he suggested that Jeremy push him in the wheelchair. Then he thought it would be a good idea if Jeremy sat on his lap and I pushed them both! In a word- incorrigible. It was really nice to relax together and do something that we all enjoy. We really missed Jessie- but she had to be in school. She stayed with my niece while we were in Salt Lake. I had a little bit of trouble because I realized that I have a hard time remembering what Jeremy and our life was like before all this happened. We are so consumed by this, even though we try to be as normal as possible. I tried to remember when I used to have to holler at him to get back with us, or to stop running, or to stop eating so many treats. . . and when he had his hair intact. I can't wait until we are back there again. Life will be even sweeter with all we have learned and how we have grown and changed through this experience. Moving on. . . Labs from yesterday are WBC -6.8, ANC -2100, CRIT -36, PLATLETS -18. We won't be admitted in Salt Lake until the end of next week or early the following week because they want him to be able to recover his platlets on his own. Because he is bruising, we are going to go to our local hospital for a platelet transfusion this evening. This gives Jeremy some extra time to be at home, which will be nice now that he is feeling better and can take advantage of the break. Platelets have been difficult for him to recover throughout this process. We got a compliment today from the Primary Children's hospital staff that really touched me. She said that we were handling this so well, and that we had made some really good decisions. She also said that Jeremy was handling it all really well. It was nice to hear- but I realize that I can't really take the credit. If we didn't have such amazing support from our friends, family, and community, we wouldn't be where we are at emotionally. Knowing that people care and support us is the foundation of the strength that we have, which ultimately benefits the boy. We can never thank everyone enough for helping us take care of Jeremy. Well- gotta go to the pharmacy. I tried to pick up this medication yesterday but the insurance said, "Wait a minute- you have enough to get through tomorrow morning!" So we have to go back and get it today. So much for pre-planning. It may be a while before I update again- we have some playing to do!
Monday, September 1, 2003 7:56 AM CDT Bright and early this morning after a late night! We went and saw Finding Nemo and Freaky Friday at the drive in last night. Both of the movies were really enjoyable and Jerm had a great time. He finally ate! He at a whole popcorn by himself. So now I am up to give him his 6 and 7 a.m. IV medication. Yesterday when we woke up, I called Salt Lake and eventually took Jerm to the Emergency Room. He was so dehydrated that he was becoming very weak and his abdominal pain and nausea was increasing to where he couldn't eat even if he would. He perked up after about half a bag of fluids, but they kept him all day and gave him platelets and more fluids (topped him off, as the Dr. said :). Ray stayed with him this time while Jessie and I went out and about. This is the first time that he has been in the hospital that I wasn't there. Jeremy didn't seem to miss me much since we live three miles away and he didn't have to stay overnight. It is so much easier when it is local! Jeremy is hoping to feel good enough today to go and get his school supplies- he says he can't possibly do the work without his supplies! Well- here's to another good day! Thanks for coming to see us.
Friday, August 29, 2003 8:47 PM CDT I apologize for not updating sooner! Jeremy and I are still home. This time has been a little more involved than last time as far as medications go. Jeremy had a platlet transfusion last night as his platelets were 12. His ANC, however, was over 600! He is not eating or drinking well, and I am concerned that he will be on TPR in addition to the IV meds. He is really trying to eat- he eats a little more each day, but hasn't really had anything for the last four days. He has a lot of catching up to do. So, that's what the dealio with Jerm is. The dealio with the rest of us is that we are tired- but very happy that we can all spend this time at home together. Today is a very special day for our family. When Jeremy was diagnosed with AML, our friends a family began to mobilize, and to give attention to the furtherest thing from our minds- how are we going to pay for all this!? There have been a number of fund raising events, including the office pools for both myself (Family and Children's Services and other Department of Health and Welfare staff), and my husband (Dell), other community agencies, Success Martial Arts/Wells Fargo car wash, Rock Creek Race Track, The Clearwater Care Center, scones at the Camas County Fair, and two bank accounts that I know of. Jeremy's uncle and family are raffling off a. . . whole Horse! And tonight- Ray and Jessie are currently attending a benefit auction that was organized by some very dear friends, each of whom fill a very different part of our lives, but worked together to organize this event. I was amazed by the many generous donations from businesses and individuals. There was a tubal ligation donated, and a dinner for 6 complete with a slide show of an African Safari (and this person is an amazing cook in my experience), and everything in between. There were many items donated by local businesses, and many beautiful hand made items. I had no idea that I knew so many generous and incredibly talented folks. The money end of this is something that many people, including myself, don't feel comfortable talking about- but I wanted to recognize the generousity and kindness that has been heaped upon our family. Ray is giving the thank you speech tonight, and he is way nervous. Jeremy really wanted to go- but his counts are still too low for enclosed crowds. I can't wait until they get home so we can hear all about it! Yet again, I feel so lucky within this challenge, as Jeremy has thus far avoided severe complications, and we have such an incredible support network. We hope that Jeremy will be strictly outpatiant by late October, at which time I will go back to work and Ray will stay home with Jeremy until he can get back to school. Then, above all we hope, pray, dream, of the day when this will be a memory that will fade over time. We will never forget the outpouring of help, nor will we ever forget the other families that we have met in person or via internet that have fought or continue to fight the good fight.
Wednesday, August 27, 2003 10:29 AM CDT Greetings from Idaho today! Yes, we are home. It was a surprise to us, but we were discharged yesterday afternoon. Jeremy's ANC is still 0, but his segs and bans had increased consistently over three days with no fevers or other problems. Because he is doing so well clinically and his counts are increasing gradually, they sent us home, HOME! HOME! He is on three IV antibiotics and the daily neupogen injection. He will be seen in Twin Falls on Thursday, then we are going up to the hem/onc clinic at Primary next Tuesday for an outpatiant check. So far Jeremy is doing well at home- but we are keeping a very close eye on him! Have a super day! Sunday, August 24, 2003 9:36 AM CDT Things continue to go well for us. Jeremy is just doing wonderful. He will get a platlet transfusion today, but that's gotten to be no big deal for us. His counts are still at 0- but I am still hoping for next week. His spirits are still up. Just the other day I was whining a little about wanting to go home and hoping his counts would kick in and he said that he understood how I was feeling, but that we are here and we are fine and we will go home when we get there. He was so cute I had to give him lovins, which he professes to not like, but I know better! So- see you all soon. . . Friday, August 22, 2003 9:27 AM CDT Good Morning all- Jeremy is still doing fabulous- no fevers, no nausea, no infections, and the rash is no more. His counts are still 0, but we think they will start going up by the beginning of next week at least. The reason we have to stay is that even though he is doing so well here, he has no immunity to fight of germs and bacteria that we pick up in the real world. With his diagnosis he is treated empirically, which is that they throw a lot of anti biotics, anti fungals, and pain meds in just to ensure that nothing happens. It's preventative vs. reactive. This is good, as I am told that once a fungal infection sets in it requires surgery to remove it. Right now he is doing so well that I am asking them to take him off of every medication possible so that he won't have all of them in his little body. I am just grateful that he is well. His spirits are really high too. I want to thank you all for keeping up with us and for sending cards and letters. Opening correspondance from friends and family is so exciting for Jeremy (and me!). We enjoyed the box that was sent from Family and Children's Services. There was no name on it, but it had Gail written all over it so I know that she at least had a hand in it! We can't wait to be home- see you soon! Tuesday, August 19, 2003 11:53 AM CDT Hi! Another wonderful day in Salt Lake City! Yesterday when Jeremy woke up I thought he looked 100% better than the day before. Today I think he looks 100% better than yesterday. The rashes are clearing up very quickly. His stomach is fine today and he started the day off with a bowl of cereal. He is unhooked from his IV pole and will be for most of the day except when getting IV medications and a blood transfusion. His stools are negative for toxin A on the C Diff, we are waiting for the results on toxin B and if it is negative he will be able to leave his room and roam about. Ray and Jessie are here with Jessie's friend Ann. Ray and Jeremy have been battling with his bey blades already this morning (some of you will know what those are- probably Shellie won't know though). Jessie and Ann and I are taking our shopping trip today in Park City at the Outlet Mall. I snuck the girls into the Parent Room so they could shower- I don't know if we can get kicked out of a hospital or not?! Jeremy is starting to think more of Make A Wish, so it is probably time to call them. I think he is leaning towards a trip to Disney World, although he still changes his mind frequently. Hope you all have as good a day as we are! Monday, August 18, 2003 11:19 AM CDT Good Morning everyone! I have been lax at updating- Luckily there is not too much to tell. Jeremy has struggled with stomache aches and diarrhea minimally. His fevers have been down for the last two days and his rashes are clearing up. Today he is his usual coloring- not bright red or really white. He has had some trouble getting enough oxygen, but that is probably due to being so sedentary. He is not able to leave his room right now due to the bacterial infection. There is only so much to do in a room that size. He has been sitting up in the chair a lot, which helps. He has not thrown up but once since we got here. He is even eating now and then. He's been coo coo for Cocoa Puffs since we got here. I had some friends from High School come and visit here- we had a wonderful time. Jessie and Ray are coming up today to stay with us until Thursday. That will be nice- we miss them so much while we are apart. Jeremy's ANC is still at 0, which is fine as he has only been done with chemo for 5 days- we expect to see that number rising any time, and so far it doesn't look like there will be complications to keep us here extra time. Whoo Hoo- through all of this I think things have gone better than expected for our family. This round of treatment appears to be continuing the trend. We are so grateful! Take care of yourselves- hope to see you soon. Thursday, August 14, 2003 12:13 AM CDT Day by day, day by day, day by day- this is my new mantra. A difficult one for a person who likes to plan! Jeremy is still pretty fine, and not even close to as ill as the last time we were residents here. He is, however, having freqent fevers and has been nauseous all day, all night. They are doing cultures and tests up the wazoo, but have been unable to determine the cause of the fevers to date. Special thanks goes out to Ms. Shellie Phinney for letting us borrow her camcorder. It has been really fun for Jeremy to work on his "document" and we have only dropped parts of it ____ times. While it has been fun to record these Days of our Lives, it has also been powerful. Jessie recorded Jerm getting a neupogen shot and his face told a thousand stories about how he's feeling. Things he would never say. This particular segment also showed how much his mom shakes while giving that shot- no wonder he says it is so painful! Jeremy has also responded to the camera in ways that he won't to people. He likes to record himself and is giving what he is saying a great deal of thought. I would recommend that any parent of a gravely ill child consider adding this tool to thier bag of survival items, along with fingernail clippers because they don't have any at the hospital and it's something at least we never thought of. Jeremy looks like he is turning into a werewolf- well, a werewolf without hair. As always, thanks for checking on us- I think of everyone often.
Wednesday, August 13, 2003 12:26 AM CDT Just an update- Jeremy continues to do pretty well. He is having some nausea, which is worsening by the day. He also has that bacterial infection causing diarrhea and stomach cramping. And. . . he spiked a fever of 101 last night. It came down quickly with only ice packs so we are hopeful that it was just a one time little spike! He is done with chemo and now we are waiting for his counts to go to 0, then head back up again. Jessie and I had a wonderful time hanging out. We went shopping at the DI and the big Crossroads Mall. Then we went to our favorite baked potato place here and had a King Potato- Yum! She and Jeremy got along well this time- that was quite a reprieve! We made Italian sodas in our room last night- it was a big hit with the family and some of the staff. In fact- it was all that Jeremy ate yesterday. Lets see- an Italian soda has half and half and whipped cream in it (for calcium), carbonated water (for some H2O) and flavored syrup (for carbs and sugars). Ok- so it didn't meet any daily allowance requirements, but it was better than nothing! Well, I'd better go visit before the family heads back home tonight. Thanks for stopping by! Wednesday, August 13, 2003 12:26 AM CDT Just an update- Jeremy continues to do pretty well. He is having some nausea, which is worsening by the day. He also has that bacterial infection causing diarrhea and stomach cramping. And. . . he spiked a fever of 101 last night. It came down quickly with only ice packs so we are hopeful that it was just a one time little spike! He is done with chemo and now we are waiting for his counts to go to 0, then head back up again. Jessie and I had a wonderful time hanging out. We went shopping at the DI and the big Crossroads Mall. Then we went to our favorite baked potato place here and had a King Potato- Yum! She and Jeremy got along well this time- that was quite a reprieve! We made Italian sodas in our room last night- it was a big hit with the family and some of the staff. In fact- it was all that Jeremy ate yesterday. Lets see- an Italian soda has half and half and whipped cream in it (for calcium), carbonated water (for some H2O) and flavored syrup (for carbs and sugars). Ok- so it didn't meet any daily allowance requirements, but it was better than nothing! Well, I'd better go visit before the family heads back home tonight. Thanks for stopping by! Monday, August 11, 2003 12:01 AM CDT Hey everyone! Just another good morning update. Jeremy is doing super well with his chemo and hasn't had a fever or a sore, or any nausea to date. He will be finished with his chemo by about 9 p.m. tomorrow, then we just wait for count recovery. He had a stomach ache yesterday and has had some scary looking blood in his stool- but they ran labs on it and there is no infection or bacteria there right now. His appetite is decreasing- he is showing no interest in food. This has been an interesting phenomenon in Jeremy's illness, I think. He is such a big eater and often uses food when he is bored or as a comfort. As many of you know, I am all over him about eating healthy and reasonable portions- a lot! Through this disease process when he loses his appetite it's like food doesn't exist for him. It's the other end of the spectrum completely. Weird. Jessie and Ray are coming up tonight and will stay until Wednesday night. They are going back a day early because Jessie has to register for HIGH SCHOOL (acck!) She and I are going to leave Ray here tomorrow to participate in Jeremy's 1st annual Beyblade Tournament and we are going to try to find Deseret Industries here and go browsing for school clothes. She is into this vintage grunge thing now- which may not be the prettiest, but it looks like we are going to save money on school clothes this year. We figure there would be a lot of great finds in a city this big. Well- thank you all for checking up on us- we miss you and our home already! Here's to another cancer free day- Friday, August 8, 2003 8:51 PM CDT Today is a wonderful day! We had gotten preliminary results from Jerm's last bone marrow aspirate (7/29/03) that indicated that the cancer was still present. The actual labs show that he is in REMISSION- that's right- and that there is no evidence of leukemia blasts either in the marrow or in the circulating blood. He will continue to be on the same treatment protocol. We will be up here for four days of chemo then wait for count recovery, which could be anywhere from 2 weeks to 2 months. When his counts are high enough we will get to go home while they come up to the point where we can come back and do another round. This next round is 2.5 days of chemo- 6 days off- 2.5 days of chemo- wait for count recovery at the hospital then at home. After that we come up once a week for three weeks to have lumbar punctures where he gets chemo in the spinal fluid- just for the poke then back home. When we get to this point we should be starting to look at life returning to normal again. Everyone cross their fingers or hope really hard or pray that there is no relapse- that his body will never have another cancerous cell ever! Today we had a lumbar puncture then we were admitted. We decorated his room - it's looking more like home but much cleaner. He is getting his first bag of chemo right now and they will be giving him 2 units of blood and 2 units of platlets tonight. They are starting to dive from last week's chemo. Funny isn't it, that is what's supposed to happen!? Jerm has a much better attitude going into this round. He is talking to other kids and is interested in learning more about his disease and other children's experiences. He is going to make a "document" as he so very cutely calls it, of his stay here. We will be hitting a select few of you up for the loan of a camcorder for him to use, to learn on, to practice with- not to BREAK, not Jeremy! Thank you all for your thoughts and good wishes- it is helping. It must be because things continue to go well for Jeremy. Thursday, August 7, 2003 9:56 AM CDT Good Morning all! Today we head back to Salt Lake. Ray and Jessie will take us down there and Jeremy and I will stay the night at the Ronald McDonald house. The trailer doesn't have a water hook up at the hospital space and I think I'd rather have water with Jerm with me. He hasn't been there, so it will be pretty cool for him- it is really an amazing place. Ray and Jessie will drop us off so that Ray can get back to work in the morning. Jerm and I will take the shuttle to the hospital at 9 a.m. for his 9:30 clinic appointment, then on to the RTU for his lumbar puncture, then back to our home away from home on the third floor. Yesterday's labs showed that his hematocrit was very low and the hospital thought he may need a blood transfusion. He hasn't had fevers or been tired or ill at all, so they decided to just wait until we got up (down?) there. Often his behavior is different than his labs indicate it should be. We shopped like crazy and got a bunch of posters (they are so expensive now!) and a lava lamp. His baseball team made him a poster sized covered picture of their team photo and we will hang that up first. It was a great idea, very thoughtful. When he got it he acted real cool, but after the boys left he was all over how awesome it was! This is the round of chemo that may keep us for a while. We are hoping that he doesn't get any infections etc. so that after his counts come up to a certain level we can leave the hospital and finish waiting for them to come up at home. School starts on August 25, so he will be missing the first couple of weeks at least. He doesn't seem to distressed about that- less than I thought he would be anyway. I will keep everyone updated while we are up there- Jerm kicks me out of his room every once in a while so I can do laundry and look at the e-mail. Please feel free to give this address to anyone who might be interested in reading Jeremy's tale as he works to vanquish the beast-
Sunday, August 3, 2003 10:04 AM CDT Good Morning from IDAHO today! We left the hospital yesterday at about 6 p.m. after Jerem finished his last bag of chemo. His blood pressure was really high when we left, but I attribute it to stress- he really wanted to get out of there! Our four day stay was without incident- yea! Jerem got a bloody nose about half way home and we called the hospital even though it only last five minutes. I was worried that it was related to the high blood pressure and I wanted to make sure we didn't have to go back before we got closer to home! They said to not worry and to just get home. Sure enough we have had no further problems. This happened last trip to- I think it is Jerem adjusting to the dryer air our way. We are scheduled to start our next round of chemo on August 8- so that gives us a nice break at home. Jerem and I will be going shopping this week for some room decorations to help us through our longer stay at the hospital. That kid is so stubborn! He is bound and determined to not feel pleasure while he is at the hospital. He avoids his favorite foods and activities and refuses to watch movies or play games. We talked about it the other day and he told me that Disney channel teaches life lessons. I agreed, but told him that you only have to watch the same shows once or twice for the lesson to be learned! I'll keep at him and we will see if we can't make the next stay more bearable for both of us! Jessie is still at her grandparents house. She has been up there helping with the scone booth that my mom is doing at the fair to raise money for Jerem- THANKS MOM! Now we can get new siding on the house or go to Jackpot and double our money (just kidding)! We are going to get Jessie today. Well- if you want to reach us, we are home until Thursday afternoon if all goes as planned. Have a great day!
Thursday, July 31, 2003 9:27 AM CDT Good Morning everyone! As we go through this stuff we learn so much every day about our child. We learn things we thought we would never need to know. For example, the drug Ativan is used as an effective anti-nausea drug. One of it's primary uses is as an anti-anxiety medication. Jeremy has never taken much stronger medication than benadryl and amoxicillian prior to this, so we don't really know how he will react to the torrential rain of medications that he is getting. Anyway, regarding the Ativan- a wonderful anti-nausea medication- he didn't vomit all day. However, he had two uncontrollable crying fits. Now, Jeremy can be pretty onery- but he is NOT given to crying outbursts. It was a side effect of the Ativan. I said no more Ativan. There are other medications we can try to control the nausea and I just don't think that falling into despair is the best thing for him right now! It is so important to ask questions when you have concerns, and to be able to tell the medical staff what your child needs or doesn't need. It can be overwhelming when 4 or 5 doctors are in the room, or when the nurses or PA are clearly very busy, but we know our children better than anyone and they need us the most. Well, that's my soapbox for today. We are still hoping/tentatively planning to go home this Saturday. Wednesday, July 30, 2003 2:33 PM CDT Greetings from sunny and HOT Salt Lake City. We are back at Primary Children's for the beginning of Jerem's second round of chemotherapy. He had a lumbar puncture and a bone marrow aspirate yesterday. The spinal fluid remains clean. The Doctor came in today and told us that he had to search for 1/2 hour before finding two bad cells, which is a great improvement, however, is not total remission, which is what we were hoping for. He thinks that this round of chemo will knock out the cancer completely. There still seems to be some confusion among the docs about whether or not a donor search is happening or should be happening- I would like them to figure it out soon! We will be here until this Saturday only- he is getting chemo for four days starting yesterday, then we get to go home for 6 days barring any fevers or infections! Yea! Knowing that there will be a break is making this stay much more bearable for Jeremy. He assured me that he will not be spiking a fever. He did throw up once today already. The nausea is starting sooner than it did during the first round. He is still a trooper though and continues to eat and take his pills by mouth. Jessie is up with her grandma helping with the scone booth at the fair. Even though she doesn't like being at the hospital, I sure miss her! Ray is up here with us as it is a short stay- he may drive back to work on Friday then come and get us- He's thinking about it. . .Anyway- we are not expecting any more news or changes during this hospital stay. Sunday, July 27, 2003 10:31 AM CDT Dear friends and family. This web page is inspired by the numerous other children who are battling with life threatening illnesses and have shared their stories to help others. Jeremy was diagnosed with Acute Myelogenous Leukemia on May 30, 2003, at Primary Children's Medical Center in Salt Lake City, Utah. Jeremy is a typical 9 year old boy, and keeps us all busy. About a month prior to his diagnosis, he had gone over a jump on his bike and wiped out completely. After the wreck he was covered in bruises, including a very impressive one around his belly button. The bruises weren't so unusual, but they never really went away. Jeremy is a big kid- 5'1'' and about 135 pounds at age 9- with a big, big, appetite. We noticed that he had lost interest in food, even his favorites, and over time we noted a 10 to 14 pound weight loss. Around this time, Jeremy was playing baseball, and would be out on the field yawning and kneeling down during practice and games. I remember scolding him at the time. In retrospect, he was suffering from bone pain and fatigues and he was working his tail off. All of these concerns led us to our local pediatrician who did a CBC and referred us immediately to the nearest children's hospital, which is 3 1/2 to 4 hour drive. This is the beginning of Jeremy's journey. He was in the hospital for 5 weeks. We had packed for 2 days and just didn't come home again until July 4, 2003. So far Jeremy has done as well as can be expected from what we can ascertain. The cancer was detected early, and Jeremy has avoided serious infections (with the exception of a bout with typhlitis) and has not had any adverse reactions to the chemotherapy. We have been home since July 4, 2003, waiting for Jeremy's counts to come up so that we can head back to the hospital for another round of chemotherapy. We are hoping that it will be a four day stay and then we can come home for six days, which will help keep up Jeremy's spirits. This experience has been life altering in so many ways. We have had an outpouring of support and caring from our families, friends, and community, that has overwhelmed us. We are only at the beginning.
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