12/31/05 Last 2005 Update Sorry for the delayed update.  We had intended on posting an update before Christmas, but Drew got sick and we had to skip Jamie's clinic, so there wasn't anything to report.   It has been a very busy (but fun) couple of weeks.  Santa was very good to the boys and I am not sure where all the new toys are going to go.  Uncle Brad got Grandma Judy a new kitten which the boys loved playing with.  Jamie had a pizza/pool party for his 6th birthday and had a really great time. Jamie has remained healthy throughout the break (even though many in the family did not!) and his most recent trip to Milwaukee showed his numbers are still holding steady in acceptable ranges:   WBC:                   3.7 Hemoglobin:        11.6 Platelets:             188   Even though his numbers were just slightly down from last time, Dr. Margolis has decided to go ahead and start reducing Jamie's cyclosporin (immuno suppressant) medicine.  We are holding our breath as this seems to be the last big hurdle we will face.  Jamie will go back up to Milwaukee Tuesday to see what effect, if any, the reduction in medicine caused.   If his numbers start to drop too drastically, the medicine will be increased and we will need to discuss our options with Dr. Margolis.  If his numbers remain steady, we can start to breath a little easier.  Overall, we are extremely pleased with Jamie's progress.  Other than the bacterial infection in his central lines, Jamie has remained transfusion free since the transplant back in June, which is tremendous.   We had a wonderful holiday season with much to be thankful for.  Really looking forward to saying "good-bye 2005, hope to never see you again!"  We are starting to get back into a normal family routine and hoping for dull and uneventful 2006.  We had enough excitement in '05 to last a lifetime.   Despite our apparent success story, we still want to remember all the other children who are still fighting this disease or, tragically, have lost their fight.  Stephanie Ott's family contacted us with a new web page they have put together acknowledging those children fighting this disease, and honoring those (including their daughter) who were taken by this vicious disease.  They were kind enough to include Jamie on the site.  Brad is going to include the website under the "Links" section on our home page.  I encourage everyone to check out this well done and moving site.   Happy New Year to everyone and again, thank you so much for all your love, prayers and support this past year.

12/19/05 Update Jamie and I made the trip back to Milwaukee on Friday instead of Thursday because he had a Christmas program.  The program went very well on Thursday night as he sang up on stage with all his classmates.  His clinical visit also went very well with all his numbers holding there own.                                 WBC           4.1                         Hemoglobin  12.2                         Platelets         196   The Dr. is still very happy with his progress and decided to wait one more week to decrease the anti-rejection medicine.  The DNA came back as 85% Jesse and 15% Jamie.  Dr. Margolis thought this was still good and we will do another test in a couple of weeks to see what happens when we decrease the med.    Meanwhile Jamie and Jesse enjoyed a snowday outside on Wednesday and we celebrated Drew's 1st birthday this past weekend.  Drew has also started to walk all around the house thinking he is pretty smart.    We will head back to Milwaukke again on Thursday of this week and will update again before Christmas.

12/1/05 Thanksgiving Update We apologize for not updating in the last two weeks as I know a lot of you are wondering how Jamie is doing.   Jamie and I went to Milwaukee yesterday and once again his numbers are still going up!           White cells    5.0   (4.0-12.0) Hemoglobin    12    (11.4-14.5) Platelets        211   (150-450) Dr. Margolis was very happy with his progress and his numbers.  Jamie's kidney function is at a normal range but we still need to push as much fluids on him daily because the anti-rejection med. is very hard on the kidneys.  Next Thursday they are going to do another DNA test and if that comes out good the following week they will start lower the anti-rejection med. This will be the big test!!  Our hope is that Jamie's body starts taking over all by himself and then each week they will lower the dose depending on his numbers.  (We are crossing our fingers) We had a great Thanksgiving weekend spending it with family and friends.  Jamie is still going to school and learning more and more every week.  We are so thankful that he can be with his friends and do normal things.  Tuesday night I took Jesse and Jamie swimming for his 1st time since May.  He had a blast even though Jesse and I thought the water was freezing.  I will update next week when we get back from Milwaukee.  Please pray for Kailee Wells who is going through a transplant right now and having some pretty difficult side affects.  She also has severe aplastic anemia. You can visit her website at www.kaileegetwells.com (you can also link to her page from our "link" page for future visits)

11/17/05 Update I took Jamie to Milwaukee today for his weekly check up.  This is his first since having all his lines removed so we were anxious as to how his labs were going to come back.  Overall, the results were good.   The one draw back to not having any lines is that we are back to having blood drawn "the old fashioned" way--with a needle.  Obviously, Jamie was not to thrilled about this as he really does not like needles (who does).  Also, it was time again for another breathing treatment which is pretty unpleasant, but Jamie did fairly well.  He got most of the treatment completed before having to quit.  His lab results came back great, in fact, higher than they have ever been:   Platelets:              230   WBC:                    6.6   Hemoglobin:         11.3   Despite these great lab results, there was one concern.  The tests done to monitor his kidney function came back high, which is not uncommon, but something that needs to be closely monitored.  We are stopping one of his medications, pushing as much fluid as we can through him and taking him back up on Monday to be checked again. Other than this concern, Jamie has been doing great.  Lots and lots of energy, eating better than he ever has, and really enjoying school.  Appears at this point that we are going to have a "normal" holiday season, which is something we (and many others) have been praying really hard for.  We are extremely grateful for this.  As much as Jamie (and Jesse) have been through, they really deserve to be home with family for the holidays.  Thanks for your prayers--they seem to be working!! 11/14/05 Update Jamie had another good visit on Thursday.  His numbers were also very good with a slight decrease in platlets but nothing to alarm about.  The doctor is still very happy with his progress.  He his now taking all oral medication so Dr. Margolis took out Jamie's pick line from his arm.  Jamie is totally free now and has nothing connected to him.  He can not wait to go swimming and take a bath without any worries of getting the lines wet.  We are very excited about this too. Platlets:      163,000 WBC:           3.6 Hemoglobin    10.5   Jamie is still going to school 4 days a week and just loves it.  We see improvement every week with his schoolwork and would like to thank Mrs. Steffen for working with him to get caught up.    We will update after this weeks visit.  Thanks for all your prayers.

11/3/05 Update: 90/10 GREAT NEWS!! Teri and Jamie went to Milwaukee today for his weekly check up.  Jamie has been doing well all week in school and feeling fine so we were very hopeful (as always) for another good round of lab results.  Fortunately, we were not disappointed.  His labs came back as follows: Platelets:        174,000    (Normal 150,000-400,000) Hemoglobin:     10.0         (Normal 11.0-14.0) White cells:       2.3          (Normal 4.0-12.0)   Dr. Margolis was pleased with these results and wanted to consider converting Jamie's Cyclosporin from IV to oral.  However, he was hesitant to do this until the results of the latest round of DNA tests came back (the samples were sent in last week and results due anytime).  The last DNA tests showed a higher percentage of Jamie's cells over Jesse's (the donor), which is not what we wanted.  It is also highly unusual to have both cells present and functioning.  If the Cyclosporin is stopped or adjusted too soon, all sorts of bad things could happen with the worst case (but possible) scenario being that we have to start the whole process over again.  What we want is for Jesse's cells to take over. Teri and Jamie were sent home and told that we would be contacted once the DNA results came back with further instructions.  As Teri was pulling into our driveway, she was contacted with the results.  Finally, we have received the great news we have been waiting for.  The DNA results came back showing 90% Jesse's cells and 10% Jamie's.  We had a mini celebration when I got home from work as this is the best news we could have received.  Our CHW nurse said even Dr. Margolis let out a little yell when he saw the DNA results.  I try not to let myself get too hopeful as this disease has a way of pulling the rug out from under you, but right now I can't help but feel as if we have finally turned the corner on the recovery road.

11/1/05 Super Heros!

10/25/05 Grandparent's Day Update

Well, it only took an airplane ride, two surgeries and numerous antibiotics and needle sticks, but we finally got Jamie back in school where he belongs.  It was great timing too as he was able to be there for grandparents day so he could show off his new school to Grandma Judy and Grandma Karen.  I know It was a very special day for both Jamie and Grandmas as Jamie told me all about it when I got home from work.   Jamie continues to feel and act great with much improvement in appetite.  Teri will take Jamie to Milwaukee tomorrow for his regular clinic check.  Hoping for some good numbers.  In addition, Dr. Margolis will be working with Jamie to try and come up with some oral medications that he can tolerate.  If successful, that will mean Jamie will not have to undergo another surgery to implant another central line, so keeping our fingers crossed for that.  Jamie does seem to be doing much better with the one oral med he takes now. 10/22/05 Update Jamie is safely back home and doing very well.  Energy level and appetite are back 100% which is great to see.  Also, his counts are looking very good as his platelets are now in the 150's which is higher than they have every been.   A new central line was not implanted yet as the temporary line in his arm is working very well.  Dr. Margolis wanted to let Jamie come home and recover for a while before deciding on whether or not to put in another central line.  He would like to begin transitioning Jamie from IV medicines to oral medicines which would prevent Jamie from undergoing another invasive surgery.   We are all for that, but also cautiously optimistic given Jamie's intolerance of oral medicines.  Next week at clinic Dr. indicated he would begin experimenting with different flavors to see if we can get one that Jamie will take.  He does take one small dose of an oral medication now which he does not really enjoy, but he is able to keep it down.  Keeping our fingers crossed we can come up with something.   Looking forward to spending the weekend with all the boys home and then getting Jamie ready for school on Monday.  He is very excited about that (as are we!).  Thanks to everyone for all the thoughtful and encouraging messages.

10/18/05 Update Things have really gone back and forth since the last update.  Today Jamie received a new line in his arm as we reported earlier, but in a "round about" way.  After the last update, we met with the ID (Infectious Disease) doctor.  He was brought in to try and figure out what type of bacteria was in Jamie's system and how it got there.   Given the length of time and amount of medicines Jamie will be on, he advised against putting a line in Jamie's arm as that is more of a temporary line and more susceptible to infections.  Dr. Margolis agreed and plans were changed so that another central line (same as Jamie had before) would be implanted, just in a different spot.  This procedure was to take place today (Monday).  Unfortunately, another type of bacteria showed up in Jamie's blood culture and the surgery had to be put off until he had at least three to four days of blood tests showing no signs of bacteria (probably the end of this week).  His fluids, antibiotics and other meds were going to be administered through a regular IV in his hand.   Unfortunately, Jamie's little veins could not tolerate this onslaught of fluids and harsh medicines and he began to experience a lot of pain.  His hand and arm also began to swell so the IV was removed and Jamie was again scheduled for surgery to implant the temporary line in his arm anyway.  This surgery appears to have gone well but this line will remain only until his blood tests come back clean for the requisite period of time and then the more permanent central lines will be implanted.  Obviously, we had hoped to avoid so many surgeries, but this disease seems to be able to dictate procedures whenever it can.   I am enclosing my favorite old picture.  I was in my office today so I was experiencing everything second hand, which was very difficult.  I'm used to being right there with him, which makes things a little easier.  I wanted to jump in my car a couple of times and head to Milwaukee.  Whenever I start to feel down or sorry for myself I always go to this picture for strength and it usually does the trick. 10/14/05 Update Tests results confirmed another bacterial infection and that the bacteria was coming from Jamie's central lines.  He underwent surgery this morning to have them removed and that seems to have gone well.  He is back in his room but still sleeping. He will have his fluids and meds administered through regular IVs over the weekend and then back into surgery Monday for new lines to be implanted, this time into his arm.  We are hoping to be back home early next week but, as always, things are day to day and ultimately up to Dr. Margolis.  We will update more after we get a chance to speak with the Dr. about what his plans and thoughts are.

10/13/05 First Plane Ride - Not as Hoped . . . We were hoping Jamie's first airplane ride would be to Disney Land.  Unfortunately, that was not the case.  Jamie began showing symptoms similar to the bacterial infection he picked up a couple of weeks ago.  Last time Jamie was transported by ambulance to Milwaukee because the weather was too bad for the plane to fly.   Because of the good weather yesterday, a jet was sent down to pick up Jamie and take him to the Children's Hospital in Milwaukee.  Jamie was too miserable to care about the plane ride, but Teri was able to ride along and she said he did sit up at one point and look out the window for a little bit.   Just talked to Teri and the very preliminary report is that there is some type of bacteria inside his lumens.  Not sure what the next step is other than antibiotics, but I will be on my way to Milwaukee shortly so hopefully more will be known by the time I get there.

10/5/05 School! No School! OK - School! Well, the emotional roller coaster continues.  As our last update indicated, we were somewhat disappointed with Jamie's lab results.  Despite this, Dr. Marigolds contacted us the next day (Friday) and advised Jamie could start school Monday.  Needless to say, everyone was extremely excited, especially Jamie.  He called his grandmas and Aunt Leah to tell them the good news.  Teri took him school shopping over the weekend to get all his supplies and Jamie could not wait to go to school Monday morning.   Typical of the last few months, Jamie became sick again on Sunday night.  Instead of going to school, Jamie spent Monday in the hospital in Dubuque.  Fortunately, all tests came back negative, including a chest x-ray checking for pneumonia.  Still, Dr. Margolis wanted to check Jamie out so Teri took him to Milwaukee on Tuesday.  His lab results came back much better and Jamie was beginning to act more like himself.  He apparently picked up some type of viral infection (probably from one of his brothers who have been fighting colds) and it had apparently run its course.  Jamie was again cleared to start school on Wednesday. We held our breath and Jamie woke up Wednesday morning feeling good.  He was extremely excited and had his back pack packed about an hour before it was time to leave.  He continually went to the door and asked if it was time to go yet. Once at school, Jamie settled right in.  Teri and I provided some basic info to his teacher and school nurse and I also spoke briefly to the class showing the students his central lines and letting them know they could play with Jamie just like any other student, they just needed to be careful of his lines.  It was a very happy morning and Jamie's teacher was very moved by his presence (Thanks Ms. Steffan!)  Hoping he is able to continue regular attendance.  He is not scheduled to go back to Milwaukee until next Thursday.  10/1/05 Update Well the saga continues.  Teri took Jamie to Milwaukee today for his weekly checkup.  Jamie has been acting great – full of energy, great appetite, playing nonstop with his brothers and friends.  We were really hoping for some great numbers and progress since his bacterial infection.  Unfortunately, his labs came back showing no change in his red and white cells and a decrease in platelets.  Very disappointing.  It seems that, not only did Jamie contract an extremely rare blood disease (aplastic anemia), but his reaction to the transplant is almost unheard of. Normally after a transplant a persons body will either except the new materials or reject them.  In Jamie's case, DNA tests are showing that 1/3 of the cells are Jesse's and 2/3 are Jamie's.  A situation in which our doctor (who is a leading authority in the nation on this disease) has not even seen.  He was able to track down a colleague who had this situation come up one time and it did not go well.  Fortunately, we have at least one case to learn from.  Based on the limited information Dr. Margolis received, he has decided to keep Jamie on Cyclosporine (an Imunosupressant) for another three months.  We were supposed to begin reducing this drug about now, but the colleague Dr. Margolis spoke to indicated he stopped the Cyclosporine too early and problems arose.  Graft Vs. Host Disease hit hard and his patient was miserable.  More transplants and hospitalizations were necessary.  Jamie's Cyclosporine level was unintentionally decreased as a result of his bacterial infection.  The antibiotics he was on reduced the effectiveness of this drug.  Unfortunately, the decrease in his Cyclosporine level and the corresponding decrease in his cell production is an indication that Jamie's cells are not going to be able to sustain appropriate counts once the medication is stopped.  That means our worst fears will have been realized and Jamie will have to undergo the entire process all over again. We continue to have all the confidence in the world in Dr. Margolis and our transplant team, and feel very fortunate Jamie is under their care.  We are keeping our fingers crossed that the extended medication time will do the trick, but we are also remaining realistic about our prospects.

9/21/05 Update The superheros are back together and back in action!  Teri took Jamie to clinic in Milwaukee today.  All counts are up and looking good, Jamie fully back to his energetic and playful self and does not need to be back in clinic until next Thursday.  His antibiotics will stop tomorrow which is good as he will get to reduce his IV fluid intake (i.e., more "free time!").  The time frames for reducing his other medications have been pushed back a little because of this, but still hoping he can join his class after Christmas break.

9/16/05 I packed up a couple of suitcases last night and Jesse and I headed for Milwaukee.  We were told to prepare to stay until Monday so that Jamie could finish out his antibiotics.  However, when we went to clinic today his labs showed his platelets were already up to 106 and the rest were holding steady. Jamie also had great energy level and both his nurse and Dr. Margolis commented on how active he was.  Because of this, Dr. let us go home today and Jamie does not have to be back in clinic until Tuesday.  Obviously, this was great news as Teri has not been home since last Thursday and Drew was certainly missing her.  Feels great to have everyone back home again and thanks to everyone offering your support and encouragement during this set back.  Really hoping Jamie does not have to go through something like this again. 9/13/05 Monday the 12th continued to be another good day for Jamie.  No pain and his platelets and red cells are actually starting to go up already which Dr. Margolis did not expect so soon.  He even gave Jamie a four hour pass to leave the hospital.  However, given the severity of the infection, Dr. wants Jamie to finish out his antibiotics in Milwaukee.  This means Jamie will not get to return home until next Monday.  If Jamie continues to do good for the rest of the week we will ask Dr. if we can bring Jamie home for the weekend, but obviously we will follow whatever Dr. Margolis feels is in Jamie's best interest.   We certainly feel blessed that we had 93 incident free days. However, this set back serves as a wake up call that Jamie still has a couple of tough battles left before this war is won.  Once again, he has shown he is up for the fight.   Footnote: We hear often how much people enjoy the pictures that are posted.  I realize there have been several updates with no pictures, however, we refuse to give this disease the satisfaction of showing Jamie under the weather.  As he is now recovering and his spirits are rising, we plan to post some new pictures soon.  Keep checking back! 9/12/05 Sunday the 11th saw much improvement in Jamie's condition.  He did not need any morphine throughout the night and woke up wanting to watch cartoons and play with his toys.  This has not happened since Wednesday as his head hurt so bad he could not tolerate the TV on even with no sound.  He basically slept from Wednesday evening until 6:00 a.m. this morning.  Today though our old playful Jamie started to return, as did his appetite.  He had not eaten since Wednesday either and today was going to be the cut off for starting nutrition.  Thankfully, he started to eat on his own and kept everything down. We will meet with Dr. Margolis tomorrow and hopefully get an idea as to when we can bring Jamie home. 9/10/05 Here is the latest "good news/bad news" report.  The good news is that Dr. Margolis has assured us that this is not a sign of rejection and/or the return of Jamie's aplastic anemia.  Although his platelets and red cells have dropped significantly, his white cells (which fight infections) have gone up.  This is an appropriate response and shows his bone marrow is doing what it is supposed to.   The bad news is that Jamie does have a severe bacterial infection which is making him very miserable.  If not for the early hospitalization in Dubuque and administration of the correct antibiotics, the Dr. advised Jamie would be in ICU right now as this type of infection can cause shock very quickly.  Fortunately, we avoided that. Due to his low red cells, however, Jamie is experiencing bad headaches.  He was given morphine throughout the night and is currently receiving a red cell transfusion which the Dr. hopes will alleviate his pain.   Dr. Margolis advised this type of bacteria is present in everyone, but not sure exactly what triggered it to raise havoc with Jamie's system.  In his best medical terminology Dr. Margolis said sometimes "s--- happens" !  Jamie will likely remain here for at least seven days, depending upon how quickly his system reacts to the antibiotics.  Dr. still considers this just a "bump in the road" and overall Jamie was doing excellent.  Until now, no transfusions since the transplant and no hospitalizations since we were released, which is much better than most in his situation. In Other News - Kevin's Fundraiser Closes on a Light Note! Congratulations Kevin on your "Pledge a Pound" fundraiser! Kevin lost 33 Pounds and received $112 PER POUND in Pledges! Way to go Kevin! Be sure and stop by Gunther's Get-A-Way and congratulate him in person! Thanks again Kevin and keep it up! 9/9/05 Update  I arrived at Childrens Hospital about 4:00 p.m.  Jamie's fever has gone down, but he is still very uncomfortable.  He was complaining a lot that his tummy hurt so a CT Scan was done on his stomach which came up negative.  At this point, Dr. just feels like he caught some type of bug and will continue with antibiotics and additional fluids.  He is also getting some morphine for the pain so right now he is resting quietly.  Jamie will be on antibiotics for 10-14 days but Dr. Margolis will evaluate him Monday and determine wether or not we will be able to take him home and have us administer them.  Keeping our fingers crossed for that.  Otherwise, Dr. is telling us this is a "bump in the road" and not to get worried, which is hard but we are trying. 9/8/05 Jamie Back in Hospital in Milwaukee Jamie experiences a set back for the first time in a long time.  After a rather normal day of visiting grandma and playing with friends and acting fine, Jamie indicated his stomach started to hurt about 8:00 p.m. last night.  He soon developed a fever and began vomiting so we took him to the hospital in Dubuque. His fever spiked at about 105 degrees and he was very lethargic so he was given antibiotics and additional fluids.  In consulting Children's Hospital this morning, Dr. Margolis wanted Jamie up there right away, but he also wanted members of the transplant team along for the transport.  We were first told that the hospital jet was going to be sent down to pick up Jamie, but we were then advised it was out of service.  An ambulance crew was then sent down and picked Jamie and Teri up today. Not sure what is going on yet as I have not spoken to Teri, but this is certainly disappointing.  Jamie will likely be hospitalized in Milwaukee for the next 7-10 days provided they can figure out what is going on and get it under control.  Jamie was scheduled to go on his first field trip next week with his class and was really looking forward to that, so this is disappointing on many levels.  Will continue to update as information is received.

9/3/05

Teri and Jamie went up to the weekly appointment on Thursday and the numbers were about the same.  Lynette and Dr Margolis are still very happy with his numbers and also that he has stayed transfusion free.  His situation is very rare so they are taking it week by week as we are too.  They do not have a time frame as when Jamie can go back to school so we are counting on January unless they say differently. Some good news coming on day 100 is that Jamie will not have to take one med. through the IV anymore.  He will have to do this one orally three times a day but he likes the banana taste to it.  They also said that the fluids in the backpack will be needed only  when he sleeps.  (Yeah)  The reason for the fluids, is because one of the meds is hard on the kidneys and they need to make sure he stays hydrated.  Next Thursday we pray for higher numbers and he does have to do the breathing treatment again.

8/31/05 Biker Boys Nothing much to report Jamie wise.  Teri will take him to clinic tomorrow so more to update then.  Just thought I would send you some pictures of recent events.  Jesse's b-day was fun, the boys got new four wheelers to ride.  The Jeep basically died and they were getting too big to ride together so they just ended up fighting anyway.  This way they each have their own.  Thanks grandmas! Jamie had some school friends over tonight to play and had a great time.  Really hoping he can join them later this year.  We are working with his teachers to accomplish this. Had to add another picture of "my" bike.  The boys asked why I had to take it back so I blamed it on Mom.  Jesse told me when he gets bigger he is going to get me a motorcycle that I never have to take back--I like the way you think Jes!

8/14/05 - 8/26/05

8/26/05 I took Jamie up to Milwaukee on Thursday and the numbers are still holding their own.  Dr. Margolis is still very pleased with them and his progress even though Jamie's case is rarely seen.  The DNA test came back and the numbers are still half and half.  Jamie is making the platelets and red blood cells and Jesse is making 99% of the white blood cells.  We need Jesse's cells to hang in there so Dr. Margolis is consulting with some of his collegues to see when to lower the cyclosporin med he is on twice a day. We need to do this slowly so Jamie's cells don't  take over Jesse's.  Week by week!!!!!!! Jamie is doing very well otherwise.  I resigned my job so I can stay home with him and administer his medications.  Tom has returned to work and also doing weddings on the weekends.  Jamie will be home-schooled until he can go back to Epworth Seton kindergarton but still no date on that.  This weekend we will be celebrating Jesse's 4th B-day and Tom's B-day.  Hope you all have a great week! Sunday 8-14-05 I took Jamie for his weekly clinic on Thursday.  Some of his counts were a little down while others were up.  Slight fluctuations are to be expected, especially since he has been battling a cold for about the last week.  Nothing to be concerned about at this point so we don't have to go back until next Thursday. Next week more DNA tests will be done to see if there has been any change in whose cells are present and in what percentage.  Hoping Jesse's cells are going up, but if not, just happy that the current mix is making cells on their own.  Jamie still remains transfusion free since the date of transplant, which is the most important thing right now.

POKER RUN FUNDRAISER A SUCCESS! Here is a picture from Jack’s Bone Marrow Donor Benefit ride. It was a great day. Beautiful weather, lots of participants, great route and over $6,000.00 raised to get people placed on the bone marrow registry. Awesome job Jack!! If no one has patted you on the back yet, they should do so now! There was one problem however. The super cool bike Teri and I are riding is a rental. I am not yet allowed to have one of my own, something about price I think, I wasn't really listening. Although, my birthday is coming up....(Hint, hint. Anyone? Anyone?) Just kidding! Thanks again to Jack for all the time he spent organizing this great event to benefit such a worthy cause. Very ironic that I participated in this event last year. Little did I know how much our lives would be affected by a bone marrow disease in the upcoming year. Also, everyone on the ride finished at Kevin's bar "Gunther's" in Centralia where the auction was held. Those of you regulars to the web site know that Kevin is doing his own fundraising for Jamie by getting pledges for every pound he loses. So far, he has generated over $100.00 per pound and he has lost close to 30 lbs. to date. Way to go Kevin!! Regardless of the generous addition to Jamie's benefit, we are especially happy for the benefit to you and your family by your healthy lifestyle changes. Keep it up!

Friday, August 19

Teri and Jamie went up to Milwaukee for his weekly visit yesterday in the pouring rain.  Jamie's numbers are still good and holding their own.   His white blood cells were 2.6 (normal 4.0-12.0), hemoglobin is 10.8 (normal 11.5-14.5) and platelets were 142 (normal 150-450).  Dr. Margolis is very pleased with his progress to date and says he is doing well.  Jamie still is fighting a cold and did develop an ear infection so they gave him an antibiotic to cure that so hopefully the white cells that fight infection will go up by next week.  Overall it was a good doctors visit.  Hopefully Jamie will be able to go to school before Christmas but we have no exact date yet. This Saturday is the fundraiser for the Bone Marrow Foundation in Dubuque with an auction,dance and dinner at Gunther's following the big Harley ride.  Yes, Tom and I are going to be riding a Harley in the Poker Run.  We hope to see a good turn out and a successful fundraiser take place.  Thanks again for all you support and prayers. Teri

Days 60-61 Jamie had another event filled weekend.  On Saturday he and buddy Ryan got to walk in a parade with the fire department. On Sunday Jamie and Jesse got to eat with their buddies Owen and Aiden and after eating Jamie was able to get in his first fishing trip since coming home.  He had a great time and even caught a fish! (With a little help from Brad).  Back to Milwaukee on Thursday where we are hoping the good lab results will continue.

8/4/05 Update Teri took Jamie for his second commute appointment to Milwaukee today.  Jamie had to do another unpleasant breathing treatment which did not start off too well.  A different nurse was administering the treatment from last time and she did not think Jamie was old enough to have a piece of candy while doing the treatment. Jamie very loudly pointed out that he was allowed candy last time and Teri was able to persuade the nurse to allow her to give him the candy and administer the treatment.  After this confrontation was settled, Jamie did great as he sat quietly and allowed the entire procedure to take place without interruption--Great Job Jamie! His blood tests also showed great results. His white blood count (WBC) was at 5.0 (normal range is b/t 4.0-12.0); Hemoglobin was at 9.9 (normal range is b/t 11.5-14.5); and his platelets were at 147 (normal range is b/t 150-450).  He is so close to being back into normal ranges for all counts that we cannot help but be excited.  Compared to where we started from, we never thought we would see these type of results.  Jamie is currently making such great progress that Dr. Margolis indicated he only needs to be seen one time per week for lab tests.  This is great news and allows us to move one step further towards a "normal family routine" again.  Just need these counts to continue or go up and everyone's prayers will have been heard.

8/1/05 Update I took Jamie for his first commute appointment today.  He has kind of a cold and runny nose so I was a little worried how the test results were going to come back.  Fortunately, I was worried for nothing as his numbers came back higher than they have ever been! For example, his platelets were at 130 on his own.  I don't think they were ever that high even after transfusions.   Even Dr. Margolis was pleasantly surprised.  Teri will take him back Thursday, unfortunately he will have to do another breathing treatment which is very unpleasant, but he will get through just as he has done before.   Everyone is thrilled to have Jamie back home, especially little brother Drew who really missed Jamie singing "Twinkle Twinkle Little Star" to him. Now to just keep him home. After returning from Milwaukee with our good test results, Jamie was able to go to the park and play with his buddy Jon, which he has been waiting to do for a long, long time

7/30/05 Saturday Update This is a scene we have been waiting for.  It shows Jamie in our drive way sitting in front of our mini van packed with all of our belongings that used to be in the Ronald McDonald House.   Jamie's lab results today showed that his counts held steady from the last clinic.  Accordingly, Jamie now only has to be seen 2X per week and we were cleared to commute from Peosta rather that staying in the Milwaukee area. So Jamie is now home!   Obviously this is great news and we are cautiously excited.  Still do not know whose cells are going to take over and still a lot of medicine treatments to go through, but overall, a very positive step forward.  Not fooling ourselves into thinking this is over (if he develops a fever or if his counts begin to drop he will be admitted back into the hospital immediately) but certainly enjoying the moment.   On a different note, I would like to ask everyone who has been following this wonderful web site created and maintained by my brother to please say a prayer for his friend and coworker Tamika.  She was a passenger in a horrible roll over accident this past weekend.  One of her arms had to be amputated and she is currently awaiting surgery to insert a plate in her head due to her severe head injuries.  Brad indicates she is conscious and alert and actually answered the phone when he called her ICU room, but still some trying days ahead.

7/25/2005 Day 48 Jamie had a great weekend and packed a lot of activities into a short time.  Despite the hot weather, we spent a great deal of time on the new swing set.  He had a picnic with Teri and Jesse on the fort, got to give his "sister" Sydney a bath, he was able to play with brother Drew and also had some neighbors over for a pizza party where poor Dean got attacked by a mob of wild kids hyped up on juice boxes and candy!   Teri took Jamie back up to Milwaukee this morning for labs.  I spoke with her a short while ago and not all of the test results were back yet, but the ones that were back were very good.  His red cells and platelets continue to go up on their own (his platelet count was over 110 which was a great surprise).  If next set of labs turn out as good he will likely get to come home again next weekend and if they continue to be good he may only have to be seen in clinic twice per week.  If so, we would likely move Jamie back here and simple commute to Milwaukee, which would be fine with us.  Keeping our fingers crossed

Day 46! 7/23/2005 Jamie gets his first taste of home in over two months!  Here's what has been happening the last couple of days.  Last Wednesday Jamie's labs showed his counts were continuing to drop so Dr. instructed us to give him another dose of GCSF, which is the medicine we discontinued last week.  Dr. indicated this was to be expected. Teri brought Jesse up Thursday evening so she could go to clinic Friday morning and then spend the weekend together in Milwaukee.  However, Friday's lab results showed that Jamie responded very well to just the single dose of GCSF and all his counts were either the same or up.  Dr. Margolis indicated he did not need to see Jamie until Monday.  I asked the doctor if we still needed to stay in the Milwaukee area as he required us to do in the past.  This time however, Dr. indicated he saw no reason why we had to stay and cleared us to go home for the weekend.  This was great news as the night before Jamie asked for the first time since arriving in Milwaukee when he could go home.  We had to wait about two hours very Jamie's meds to be delivered and then we were on the road.  It was great watching Jamie experience his new swing set and, as hard as it was for Jesse to keep it a secret, he did a great job and Jamie was really surprised.  I think a weekend home for Jamie is just what everyone needed.   We also received the result of the more specific DNA test.  I earlier posted that the first test done showed 85% Jamie's cells and 15% Jesse's.  The most recent test showed these cells (Lymphocytes) were now 90% Jamie's and 10% Jesse's.  However, the test also showed  that another set of cells (Nuetrophils) were 100% Jesse's. This means Jamie currently has both his and Jesse's cells present and working.  Dr. Margolis referred to this result as "mixed chimerism" and indicated it can and does work.  We know this result is currently working for Jamie for two reasons:   1.  The medicine we just administered to Jamie only effects his white blood counts, not his red counts or platelets.  Jamie has not needed any red cell or platelet transfusions since his transplant so these are being produced on his own;    2.  This medicine also only acts to boost production out of cells currently present in his marrow, so if there weren't at least some cells being produced by Jamie, this medicine would have no effect.  It would be like putting gas in a car with no engine. You can put in all the gas you want, but the car still isn't going anywhere.    Not sure how this is all going to play out with two different types of cells, but Dr. Margolis indicated he really does not care whose cells take over, if they ever do, just as long as they continue to produce and there is no rejection.  As always, we will wait and see and continue to be thankful for the progress made so far.

7/20/05 SWING!! While we have been up here at the hospital, our awsome neighbors took a collection throughout the subdivision to purchase a swingset for the boys.  Ann Decker sent me a series of pictures of  them putting it together (although pics 1 and 6 are just for our benefit!).  It looks great and I can't wait for Jamie to see it.  How cool is that!

7/17/05 Sunday Visitors are gone now but Jamie and Jesse had a great weekend.  Jamie got his horsey back rides from Aunt Leah and got to spend time with Cousin Trent, which he has really been looking forward to.  Kind of a let down when everybody left so we took the boys to a movie (Madagascar) which was really good, for adults too! Keeping our fingers crossed for good test results tomorrow so that Jamie can continue to have visitors and--dare I think it--maybe actually bring him home for a weekend.

7/17/05 Saturday / Sunday Update Jamie's numbers were good enough yesterday that we do not have to go back until Monday so nothing to report number wise.  We had another fun day with our visitors.  Went down by the lakefront were the boys played by the water and watched some really cool planes (and helicopters) as an air show was going on.  More on Monday after we get Jamie next round of lab results.

7/15/05 Friday Update Another good round of lab reports today.  His ANC is up to 17,200 and his platelets were up to 92 (which is higher than after some of his previous transfusions!).  We can now stop giving him the medicine started last week to boost his white cell production.  Dr. Margolis told us that, because we are stopping this med, his counts will go down some and that is expected and normal.  They just cannot drop too much in proportion to other cells, specifically lymphocytes, which are bad when the percentage gets too high like last week. Currently, the numbers are very encouraging and it appears we are getting back on track.  Just need them to be maintained once his meds are reduced. Jamie's appetite and energy level are still very good and he is currently having a very fun day.  Grandma Karen, Aunt Leah and Cousin Trent came up for a visit and they brought brother Drew. Leah previously told Jamie that once he got home Uncle Dan and Trent would take him fishing.  He has been talking about that constantly so Leah and Trent brought Jamie a new fishing pole and tackle box so he can start practicing--he was thrilled.  After lunch everyone packed up for a trip to the zoo (except Drew and me) so lots of fun things for Jamie today.

7/14/05 Thursday [FINALLY! A new update! I got so bored waiting that I repainted the Website! --Brad] I arrived back in Milwaukee last night with Jesse.  Jamie was very excited and the boys had a good time together even though we got in late.  They pulled out the sleeper bed in the couch and had a "camp out."  Didn't think it would last too long but they ended up sleeping there all night.   All of us went to clinic this morning for labs and also met with Dr. Margolis.  Much improvement since last week.  His absolute neutrophil count (ANC) which had dropped down to 32 last week is now up to 11,175 so that is a huge increase.  He continues to produce platelets which are now up to 72 without any transfusions.  Dr. Margolis was very pleased with how well Jamie responded to the adjustments in his meds. Dr. would not go so far as to say we are now out of the woods, but he did say it appears we averted a major disaster.  Not really sure what happened last week to cause the set back, but the doctor's educated guess is that his medications were not being administered consistently enough orally (Jamie has great difficulty taking oral meds and keeping them down) so his immune system was able to start fighting the new cells again.  The change to IV seems to have done the trick.  Once his counts get high enough, we will start to decrease his meds and hope is able to maintain his counts. No results yet on the DNA testing to determine whose cells are in there working, but Dr. Margolis indicated today that he really didn't care what the results were as long as Jamie continues to have working cells, but it will still be interesting to find out.   We had a nice time by the lake today.  There were some Navy jets putting on a show which the boys liked.  Now we are getting ready for a barbeque in the Secret Garden and then hopefully a quiet night.

7/11/05 Monday

Met with Dr. Margolis today.  Jamie did well over the weekend, his fever did not come back and he had very good energy level and appetite.  His counts are slowly creeping back up and Dr. Margolis was encouraged by his labs today vs. Friday.   Dr. believes some of Jamie's cells which made it through chemo are now in competition with Jesse's cells.  This is more along the lines of rejection than graft vs. host which is more common in this situation.   The good news is that Jamie's marrow is producing enough cells that he has not needed any transfusions.  The million dollar question at this point is "Whose cells are they?"  Further DNA testing will be done to try and determine this, but it will take several tests over time to know definitively.  Obviously, the best case scenario is for Jesse's cells to take over.   Although we are still in a "wait and see" situation, Jamie's cells are currently going up and we do feel some relief after talking to Dr. Margolis.  Jamie will probably stay a couple more days in the hospital just so his meds can be administered consistently and then discharged again to RMH if his counts continue to go up. 7/8/05 Friday, In a Frustrating Holding Pattern Sorry about the late update.  It has been a long day.  Our status as "outpatient" was short lived.  In addition to Jamie's counts being in flux, he also developed a fever today so he was admitted back into the hospital.  He will need to be watched closely to determine if he needs to be started on any antibiotics. His numbers today were the same, which is disappointing as it was hoped the new medicine he has been taking would boost his white cells.  We are now doing further adjustments to his medications in an attempt to further suppress his immune system and boost his cell production.  Next week, a more specific blood tests will be done in order to determine whether it is Jamie's or Jesse's cells which are producing.  Until then, we are simply in a "holding pattern" to see if the transplant was successful. Despite this less than positive report, Jamie remains active, in good spirits and eating well.  Going back into the hospital did not really phase him and Teri came back up tonight so Jamie was excited to see here and show off some of his new zoo animals we got.

7/7/05 Thursday New Challenges Arise as We Face First Setback Met with our transplant nurse today (Dr. Margolis is on vacation but has been in contact) regarding Jamie's ANC drop (which is now down to 32). The additional tests which were done yesterday were basically DNA tests attempting to find out which cells (Jamie's or Jesse's) are present in Jamie's marrow.  If the tests came back showing 100% Jamie's cells and 0% Jesse's, that would show the transplant was a failure and Jamie's body rejected Jesse's marrow.  Obviously, we want the opposite results. For those of you who have been following the web site, I know what you are thinking: "If Jamie's system rejected Jesse's marrow, how could some of his numbers go up and give the impression Jesse's marrow was engrafting?"  At least that was the question I had.  Unfortunately, there is an answer to that question.  There is a possibility that when Jamie went through chemo and had his immune system suppressed, that gave his own marrow a chance to recover and begin producing on it's own.  In fact, that is basically the treatment given to those without a donor. Interestingly, the DNA tests came back showing a 50/50 split between the boy's cells.  That means Jesse's cells are now competing with Jamie's to take over (talk about siblling rivalry).  The medicine Jamie has been receiving is an attempt to boost Jesse's cells and take over.  What does all this mean?  There are basically three different scenarios which could play out:   1.  The new medicine Jamie is currently taking works; Jesse's cells take over and the aplastic anemia is beat;   2.  The new medicine does not work, the transplant itself will be a failure, but Jamie's cells which have now been "kicked into gear" take over and we beat the aplastic anemia, although in an unintended manor;   3.  The new medicine does not work; Jamie's cells are working just enough to prevent Jesse's from engrafting but not enough to beat the aplastic anemia and we start all over from square one (meaning another round of more intense chemo, another transplant and several more months of hospitalization).    It appears as though our sighs of relief may have been premature, but all is far from lost.  2 out of the 3 scenario's above are positive so the odds continue to be in our favor.  I still refuse to allow this crappy disease to let my thoughts turn negative.  I find solace in all of the tremendous thoughts, prayers and support which continue to pour in.   Tomorrow we go to clinic again at 9:30 a.m.  In addition to the regular testing, Jamie has to recieve an additional medicine through a nebulizer (breathing mask) to fight against a specific and aggressive form of pneumonia.  The procedure takes about 20 minutes and is very unpleasant, so not really looking forward to that.   Despite the apparent set backs, I took Jamie to the zoo again today and we were able to have a few hours of enjoyment.  This time his favorite animal was the polar bear!  Will keep everyone posted.

7/6/05 Wednesday Today was definitely one of those "mixed results" days.  We arrived at clinic about 9:30 this morning for labs and then appointment at 10:00.  During our appointment, some initial lab results came in which showed continued progress.  Jamie was evaluated and we were told we could leave and Jamie was not scheduled to be seen again until Friday. However, as we arrived at the lakefront to spend some time together, the hospital called and notified us Jamie's ANC (which had been in the 400s) had dropped to 70 and we needed to get back to the hospital right away, so we got to spend about five minutes at the lake. When we returned, Jamie had more blood drawn for some additional testing and was also given some additional medicine.  Not sure what is going on at this point.  Could be the start of some GVHD, although the symptoms do not quite fit as some of his other counts actually went up and he is not exhibiting any of the other signs you would expect for GVHD.  Hopefully, we will know tomorrow as we are scheduled to be back in clinic at 9:30 a.m. As I mentioned before, 2 steps forward and 1 step back; overall we are still making progress.

7/5/05 Tuesday Jamie has been discharged from the hospital to the Ronald McDonald House across the street and is ready to take on the world! Most of his counts continue to rise with some fluctuations.  Overall, I would say we are now taking two steps forward for every one step back, so we are continuing to make progress.  Even with the fluctuations, we were able to discharge Jamie to the RMH. Teri and I will be meeting with the home healthcare nurse shortly as she will be showing us how to administer some of his meds through his IV pack as well as proper care and cleaning of his tubes as well as what warning signs to watch for.  She will be hooking him back up to the IV pack when she arrives, but Jamie was able to "run wild" for about an hour and a half without being hooked up to anything!  He hasn't been able to do that since we left Peosta. Got some nice pictures of Jamie being discharged as well as Jamie taking one last look from his favorite perch.

7/3/05 Sunday Another good day with Jamie.  His numbers are holding steady and he is starting to take his oral medications a little better (the battles have been reduced from all out warfare to minor skirmishes-thanks to the magic of bribery!). Had another enjoyable day out of the hospital.  We started at the Ronald McDonald House with our first visitors.  I really enjoyed seeing Ken, Sheri, Todd & Melissa but Jamie was pretty quiet.  Still not used to "outsiders" as his contacts have been very limited for the last month so we will need to work on that. After our visit, Jamie and I went down by the lake front to see the "big water."  It was pretty busy as Summer Fest is going on this week but we were able to find a quiet spot and enjoy the beautiful day.  There were a lot of planes flying over so Jamie took a picture of one and said "I bet Uncle Brad is on that plane." He thinks Brad commutes everywhere by plane! Teri will be up tomorrow and we will hopefully be able to start moving things over to the RMH and then be discharged on Tuesday from hospital and head to RMH.  I think that will be the point when everything will start to sink in for me that Jamie is actually beating this terrible disease.  I have been encouraged by all the positive results, but still unable to fully relax.  I hoping that will change this week.

7/2/05 Saturday Jamie's counts continue to look good and no signs of GVHD. His ANC, which needs to be 500 before release was up to 432 today. I was able to spend my first day with Jamie outside today.  We found a little park close to the hospital and had a picnic.  As we were sitting there, a deer ran right by us, which Jamie loved.  Because the park is in town, I was very surprised and unable to get a good picture, although I was able to get enough of a picture to prove I was not halucinating. Still keeping our fingers crossed for full release on the 5th.

7/1/05 Friday I arrived back in Milwaukee this afternoon and Teri filled me in on Jamie's counts, which are all continuing to go up on their own, including his platelets which even surprised the doctor.  His ANC needs to be at 500 before he can be released to out patient and today it was up to 408, so it looks like we will be able to hit our target date of the 5th. Jamie's counts are high enough right now that the nurses no longer have to wear face masks when they come in and he can be more mobile. In fact, today Jamie was able to get his first breath of "outside air" in a very long time.  He was allowed his first 6 hour pass today so I actually met Teri and Jamie at the Ronald McDonald House.  That was a very nice change as we all enjoyed spending some time together outside of the confines of the hospital.  Teri said Jamie's first stop was the hospital gift shop to look at all the toy animals and then outside for some fresh air and sunshine.  I'm looking forward to spending some more outside time with Jamie tomorrow.

6/30/2005 Update from Teri

Dr. Margolis stopped by yesterday afternoon and told us Jamie is doing exactly what he is supposed to.  He did state that he would feel more comfortable if he we stayed in the hospital until after the holiday weekend since we would not be seen by a doctor until Tuesday when the clinic opens back up. Better to be safe than end up back in the hospital again.  The good news is that Dr. also said that Jamie could get a 6 hour day pass to go out of the hospital on Saturday, Sunday and Monday. YEAH!!!!  We can not wait to get him outside for awhile in the fresh air.  Jamie's WBC are still at .6 today and the ANC is about the same. (this is normal)  He did try to make some platelets though which is a great sign so they are going to hold off on doing a platelet transfusion to see if the numbers continue to rise.  Still no fevers, high blood pressure, and nausea.    I got a chance to watch the video of the benefit yesterday and was so touched by everyone that attended.  Special thanks to our wonderful friends and family who planned the entire night and thanks for everyones generous donations!!!!!!!!!!!!!!!!!!!  I have to go play now!!!   Love Teri

6/29/05 Wednesday Update Tom is in Des Moines for two days going through his magistrate orientation so I (Teri) will do the updates for a couple of days.   The lab report today says that his white blood cell count is up to .6 from .5 yesterday.  The neutrophils (fights infection) count is at 324 from 170 yesterday. The doctor will release Jamie from the hospital when his level reaches 500 so we are crossing are fingers that we will get there by Friday. All the nurses have been training me how to do a dressing change, flush his central lines, and administering his other medications through the IV.  Jamie will still take two meds orally and two meds through a small IV pack when he is releasesd so I have to make sure I know the correct procedures. Jamie is been in good spirits still and we have just been playing with his superheros and coloring alot.  We now have 9 Batman figures so please SEND BAD GUYS so he has something to fight against! :-)  Thanks again for all your love and support.  Take care!!! -- Love Teri

6/28/05 Tuesday - Day 21 Transplant Starts to Take Hold! This is the good update we have all been waiting for! Met with the doctors this morning as they have been watching Jamie's lab results closely.  In particular, his white blood count (WBC) as these types of cells are not transfused, unlike red cells and platelets.  Because Jamie gets transfusions for these other cells, it is more difficult to tell when the new marrow is engrafting.  However, any sustained increase in his WBC is likely a positive sign. Since his chemo, Jamie's WBC has been at 0.1 with slight fluctuations due to the testing procedures.  For that reason, doctors are careful not to give any false hopes with slight increases.  However, on Thursday of last week Jamie's WBC went to 0.2; stayed at 0.2 on Friday; went to 0.3 on Saturday; 0.5 on Sunday and was 0.5 again today. Given this history, the doctors are now willing to tell us that the increase is due to the marrow begining to engraft and not fluctuations in the testing procedures.  That means, for those of you holding your breath with us, it's time to EXHALE!!  This is obviously the news we have all been waiting for.  The nurses will now begin training Teri and I on the out-patient procedures we will need to perform on Jamie.  If his numbers continue to rise at the current rate, there is a chance he could be released to the Ronald McDonald house by the end of this week, which would be wonderful and ahead of schedule.  Still have to watch for signs of graft vs. host disease, but the longer we go the lower the chances become. If released to out patient basis, Jamie will still have to been seen and receive other medications every day for approximately the next 1 to 1 1/2 months, but he will certainly be more comfortable and be able to do more things.  It appears the all the wishes, prayers and rainbows have paid off!  We have a ways to go before coming home, but this is a giant step in that direction.

6/26/05 Sunday Update Tom's Update - Sunday June 26th Jesse and I arrived safely last night.  I had a wonderful time on my short break relaxing at home with Jesse and Drew before the big night.  I finally got a chance to see my new yard and give it a watering with my little helper Jesse. As Brad mentioned, the benefit was an overwhelming success.  It was very heart warming to see the large number of people who attended. Thanks again to everyone who participated and made it such a successful and enjoyable evening.  And to those of you who were unable to attend but sent your thoughts and wishes (and there were quite a few of you also!) thank you as well.  Grandma Judy, Brad and Drew came up for a visit today.  Another long overdue reunion as Jamie has not seen his baby brother since the end of May.  We had a very nice visit despite the cramped quarters.  Jamie was able to play with Drew, feed him and even give him a stroller ride. (Don't worry about his face and arm - those are Spiderman tatoos!) Those of you who attended the benefit know this coming week is going to be extremely important.  The doctor indicated that from day 18 on Jamie's new marrow should begin to showing signs of engraftment and if nothing appears by day 25 he will start to get worried.  At this point, we have had some very preliminary lab results which are encouraging.  I am hoping to see Dr. Margolis tomorrow to review the lab results and get his impressions.  I will certainly e-mail to Brad any news once I get it.  However, Brad will be flying back to Florida tomorrow so his flight schedule will impact when he is able to post my messages-just keep checking back! Thanks again.

6/25/05 Saturday Update - Fundraiser a Huge Success! Message from Brad: Thanks for attending the Fundraiser! It was an awesome success! We are still trying to figure out the total as all of the event planners went home with cash and checks in every pocket! We will add it all up and let you know how much was raised. Photos from the event will be posted soon! Tom and Jesse left for Milwaukee today. Grandma Judy, Drew and I will go up tomorrow. Looking forward to seeing Jamie and showing Teri the tape from last night! She will have to see the evidence to believe someone would pay that much for a six pack of beer! Thanks again for all of your support and to Char, Shelly, Ann, Leah and Suzy for all of your help. (And thanks to the Woodwards for letting me crash at your place!!) Check in soon as we near day 19. We are praying for our miracle that the bone marrow is kicking in! Good news soon!!

6/21/05 Tuesday Update Things uneventful since last update, which is what we want.  Still holding off on the red blood transfusion as no symptoms yet, however, he is currently getting a platelet transfusion as they dropped to 25. We have been watching a lot of Batman and Robin, so Dr. Margolis wore his Batman tie in hopes of getting Jamie to warm up to him a little more when he checks him in the mornings.  However, as the attached picture shows, the tie had little effect as Jamie is just not a morning person-I don't know where he gets that. We still enjoy watching the helicopters fly in and out and Jamie took a picture of one flying by our window. Jamie is anxiously awaiting the return of Teri tomorrow along with another round of presents and I am looking forward to going home for a few days to see Jesse and Drew.

6/20/05 Monday Update

Met with Dr. Margolis today for the first time in a few days as he has been off.  Jamie was scheduled to get a red blood transfusion today but since we have seen no signs of fatique, loss of appetite or other symptoms, Dr. felt we could hold off a little longer. His platelets are down to 36 but not unusual according to Dr. Margolis.  He calmly reminded me that we should not being seeing any growth as of yet, and that includes all cell types.  He knew where I was going with my questions and again indicated that everything is going well and not to start worrying until about day 25.  My nerves have been calmed for the time being. Jamie is so far having a good day playing.  We have been so fortunate to avoid the more harsh side-effects of chemo, although his hair loss is becoming more noticable, he has been feeling well and full of energy.  I continue to be amazed as to how he is able to maintain such a positive attitude.  Yesterday was the first time he asked me why he "could never breath outside air."  After a short explanation, he was back to playing.

I don't think Drew has made the site yet so I thought I would attach the nice Father's Day picture I received of him!

6/19/2005 Sunday Update

Happy Father's Day to all the fathers out there. Thank all of you for the Father's Day wishes sent to me. As my mom pointed out, this will definitely be one to remember. Although I can't think of a better way to spend a Father's Day than being present for a sick child who is getting better. Jamie's hemoglobin continues to drop and will receive a red blood transfusion tomorrow. We are fast approaching the time frame when we should hopefully start to see some signs of independent production from Jamie's new marrow but... we are not there yet so I have to force myself not to get too anxious. He is doing so well in all other respects, we just have to remain positive the marrow will engraft. Speaking of doing well, a dentist just left from taking pictures of Jamie's mouth. They take pictures every two days to monitor for sores. This dentist said Jamie is doing "amazing" and told me that in 90% of these cases the patient will develop severe mouth sores by day 9 which usually work their way back into the throat. This results in the patient being unable to eat and the insertion of a feeding tube through the nose. He also advised that if the sores do not appear by day 9, they likely will not appear. Since we are now on day 12, starting to feel as though we are "out of the woods" on this issue, but being cautious nonetheless. Just extremely thankful to have avoided any problems to this point. The attached pictures show Jamie relaxing as the nurses perform routine changing of Jamie's tubes and medications.

6/18/05 Saturday Update

Day +11 finds Jamie maintaining the status quo and the nurses continuing to comment on how well he is doing.  Teri and Jesse just left for home.  The boys enjoyed their time together for the most part, although two little boys in one hospital room for extended periods of time can get a little tense.  I stayed with Jesse at the RMH the last couple of days so Teri could spend some time with Jamie.  We had a lot of fun playing in the Secret Garden.  He is really into the "why" stage right now: "Why do trees have needles?" "Why are needles sharp?" "Where do bumble bees sleep?" "Why do they have stingers?" and on and on...We had a really good time together and he can be such a sweet little boy when he wants to. Although, Jamie's dentist came in last night to check his mouth and he said to Jesse "You must be the donor!" He must not have read my warning on the web site.  There is now a one armed dentist practicing in Milwaukee. Teri will return Wednesday and I will head home for the first time since the end of May.  I am looking forward to that short break as well as attending the benefit.

6/17/05 Friday Update Nothing unusual to report today.  All numbers still suppressed but in expected ranges (except platelets which are up to 93 due to yesterdays transfusion).  Jamie remains active, free of mucositis (mouth sores) and good appetite-another good day to be thankful for. Thought I would post some miscellaneous pictures we enjoyed.  Some we took, some were sent to us and some Jamie took himself.  I know I have attached a couple of rainbow pictures already, but I could hardly pass on this one as it appears to becoming down right on our house in Peosta.  I don't know of a more positive sign. No-our house did not start on fire while we were gone.  Just "the guys" using the CPFD's tanker to water our new yard! Very nice picture of Jamie's class sent to us with the beautiful quilt they put together. Jamie was initially signed up to play T-ball this summer but obviously could not.  The Peosta T-ball teams sent him a nice note along with an official T-ball hat. Jamie wanted to take some pictures today (which he is very good at) so he took some of his room decorations compliments of Jamie and Mom as well as his favorite nurse Katie. Thanks for all the great messages and I look forward to seeing everybody a week from today!

6/16/05 Thursday Update Jamie and Jesse continuing to enjoy their time together, playing and fighting as if never apart.  Jamie received some great gifts from his NICC class, including a video we have watched over and over and a beautiful quilt with many pictures drawn by his classmates.  Actually, Drew and Jesse also received similar quilts from their classmates so we greatly appreciate those wonderful gifts from NICC staff and volunteers who put them together.  I have attached a picture of Jamie looking at his, but those of you attending the benefit will be able to see all of them on display.  Spent some quality time with Jesse last night at the Ronald McDonald House in the "Secret Garden."  Discovered he really does not like to be referred to as "the donor."  He really gets angry so if any of you happen to see Jesse in the future, do not refer to him this way or you may loose a limb! Nothing new to report with Jamie's situation, other than he did receive a platelet transfusion today as expected.  The dentist continues light therapy to reduce mouth sores, which we have avoided to this point.  The dentist indicates the sores usually appear between day 5 and day 10; we are on day 9 so hoping to avoid them all together.  Dr. Margolis stopped in to advise all numbers are as expected and everything seems to be going as hoped.  He indicated if Jamie continues to feel well, the biggest problem we may run into is boredom.  Given the alternatives, we will take boredom as the biggest problem anyday!

6/15/05 Wednesday Update
	Jamie and Jesse finally reunited in person.  Both have been anxiously awaiting this moment and fortunately everybody stayed healthy so that it could happen.  This is just what everybody needed.  More details later, for now I am enjoying the reunion and all the presents everyone sent for the boys.

6/14/04 Tuesday Update

Another good day yesterday and night last night.  Each day that passes in which Jamie does not feel the effects of chemo is a good thing. Doctors can't say when we will be far enough along that we won't have to worry about side-effects as each child is different.  All they can really say is to count each good day as a blessing and know that some side-effects will appear eventually, so trying to take their advice and enjoy every good moment. Today Jamie's counts looked low but within expected ranges.  His platelet count was at 36, so he has held his platelets well since the last transfusion.  Will get another platelet transfusion once he drops below 20, probably tomorrow or the next day. We have been spending our days playing zoo animals, walking the halls to get our daily treat, coloring and anxiously awaiting the arrival of Mom and Jesse tomorrow.  We also continue to find inspiration in all of the heart felt thoughts and messages which are still steadily flowing in.

6/13/05 Monday Update Teri now back in Dubuque with Jesse and Drew.  My first night with Jamie (with Teri back home) went very well.  Just have to get used to sleeping in 45 minute increments as that is about how long between checks and changes of medicine.  Jamie is able to sleep through most of it, so that is good. He is very excited about Jesse coming to visit and actually being able to come into his room.  The only problem is that he does not have a grasp on the concept of "time."  When Teri left yesterday, she told Jamie she would be back with Jesse in a couple of days.  Last night as we were watching TV Jamie asked what was taking Mom so long to get back with Jesse.  Tried to explain, but I still don't think he gets its.  Anyway, something to look forward to. Received some great pictures from home.  Appears Jesse is taking some time off from the hero business and relaxing at the pool with his favorite gal Julia. One of our main projects this summer was going to be to put our yard back in after some extensive excavating work was done when the house next door to us was built.  The excavating really needed to be done, but has been a great source of stress for me trying to figure when I was going to be able to get the yard in.  Once again, our family, neighbors, and friends (and their kids!) came to the rescue. Attached are pictures showing Dean, Jack, Ron, Ray and Tim hard at work putting in our yard.  It looks like they put the kids to work as well so thanks also to Michael, Andrew, Emily, Kathryn, Jack, Ben, Ryan, Julia and Zoe! For some reason, saying "thank you" just does not do justice to the appreciation we feel.

6/12/05 Sunday Update Another sign? The photo above was sent by one of our neighbors back home. When he looked out and saw the rainbow, it appeared as though it was coming down right on our house and he immediately thought of us and took the picture. We'll take any sign of hope we can get. Jamie continues to do well although all his blood counts continue to drop as a result of chemo. He had a platelets transfusion last night to assist with clotting. We will watch him carefully as it will take about 7-14 days before his new marrow starts to "kick in" and he is now at his most susceptible. A physical therapist stopped by to help with ideas to keep Jamie active even though he is basically confined to his room. He really enjoys playing catch and "volleyball" with a beach ball. Also, Teri bought a Nerf basketball hoop that I put on one of the doors and Jamie has fun shooting hoops. Need to keep him active for many reasons. His weight also needs to be closely watched as a lot of fluids are being pushed through his system to flush the chemo. All these fluids can be retained and lead to weight gain if not watched.

At this point, Jamie continues to do well with his appetite, energy and behavior and we are very grateful. More than one nurse has commented on how impressed they are with how Jamie is doing. However, we continue to remain cautiously optimistic. We have been advised the full effects of the chemo can take up to 10 days to set in. We are only on day four so no celebrations yet, just thankful for the good days we are having. Tomorrow Teri plans to go home and I will stay with Jamie. Jesse has been confused and missing his Mom so it will be very nice for Teri to be home. We are hoping Jesse gets over his cold quickly so that Teri can bring him back up here and the brothers can spend some quality time together.

6/10/05 Friday Update More progress.  Dr. Margolis let Jamie leave his isolation room for the first time since he was admitted over a week ago.  Dr. said we just have to be careful to keep him away from other people/kids and he is fine to walk around the halls and play.  Jamie enjoyed "stretching his legs" and walking around the unit.  He had to stop and play with every toy he encountered, which also lifted his spirits as I believe being confined to one room for so long was begining to wear on him.  No behavior issues at all last night or today so it appears the change of meds did the trick.

6/9/05 Thursday Update Things going fairly smoothly so far.  Teri reports a good night last night.  Dr. Margolis stopped by this morning to report everything looking good so far.  He also showed Jamie how to squirt water with a syringe.  So far, Jamie has gotten dad and his nurse wet-thanks a lot Doc!  He is getting a real kick out of that so now all the nurses are checking his hands to make sure he is "un-armed."  At this point, Jamie continues with anti-nausea medication and antibotis. Drs. will continue watching his lab results closely for any signs of GVHD (graft versus host disease).  Because Jamie's system is basically wiped out, there is a greater likelyhood that Jesse's marrow will recognize it is not in its "home" anymore and reject Jamie's body.  That is bad and we don't want any GVHD for Jamie, which is unlike leukemia transplants in which some GVHD actually has some benefits.  Not the case for Jamie's situation-we do not want any GVHD.

6/8/05 Recovery 3:30 p.m.  Just received call from Grandma Judy - Jesse, Drew and grandmas now back safely in Dubuque. Jamie is relaxing watching cartoons and eating a late lunch/earlier dinner with no behavior problems since his meds were adjusted.  Again, a great relief.  I have stayed with Jamie the last three nights so he is looking forward to an evening with Mom.  We shall see what tomorrow brings. 11:45 a.m.   Teri and I starting to feel a little anxious regarding Jamie's behavior and how to feel about the transplant.  It just seems as though whenever our anxiety levels begin to rise, Dr. Margolis appears on cue to calm the seas.  Today was no different. He stopped by this morning to check on us and we explained to him the behavior we were experiencing with Jamie and our concerns.  He indicated that was a very common reaction by some children to the histamine medications and felt a few simple adjustments would take care of the problem.  Also, Dr. Margolis provided us with some additional good information regarding Jesse's marrow.  I mentioned in an earlier update that Dr. Margolis had called and left a message with the nurses that Jesse's "numbers looked good."  He now explained to us what he meant.  He advised that a typical donor's marrow will contain about 1% "seed cells" which are the important ones to begin producing new blood cells.  Jesse's marrow contained 3% seed cells.  That means instead of receiving 3-4 million seed cells per unit, Jamie will be receiving around 9 million.  Dr. Margolis was very pleased with these numbers so that is a great relief. 10:00 a.m. - A hero says, "see you later".

Jesse was able to see Jamie before leaving.  Still not able to have direct contact but they did exchange some toys and giggles.  They seemed to enjoy the brief encounter, but very difficult for everyone else.  Several tears quietly shed. Jesse seems to be doing very well physically and not complaining of any pain.  Pretty confused about not being able to see Jamie more and why Jamie can't come home, but we're trying to explain the best we can. Jamie still experiencing some drastic mood swings so Drs. are modifying some of his medications to see if that helps.  Very hard to know if it is because of the medications or the circumstances.  I suspect a little of both.  Teri should be back soon and that will help. 6:45 a.m. On my second cup of coffee.  Not much sleep for me and a restless night for Jamie.  His vitals were monitored frequently last night as his temperature and blood pressure played a few games.  Not enough to get panicked, but enough to worry dad enough that he stayed up to watch each time they were checked.  Vitals are now in "normal" ranges and Jamie sleeping quietly.  Not sure why the quirks, but when you think of all the chemicals and foreign substances running through his body right now, it's amazing his vitals are as normal as they are.  His mood was also a little "off" last night, but that is more understandable given the long days and nights he has put in. Hoping he gets some quality rest today. Saw Jesse last night about 9:00 p.m.  He was getting ready for bed after an evening of play at the Ronald McDonald House.  He seems "no worse for the wear" after his surgery but does appear he intends to get some "mileage" out of the ordeal.  Teri said that after playing normally for quite a while, Jesse dropped something on the floor and told his Grandma Karen to pick it up.  She politely responded that he could go ahead and pick it up.  Jesse reached for the bandage on his back and explained he couldn't because it would hurt and that she needed to.  In true "male" form, it appears he is going to milk this for all it is worth, and knowing his grandmas, it could be worth a lot!

6/7/05 Tuesday - Day Zero - Transplant Surgery

6/7/05 Tuesday 9:20 PM 9:20 p.m.  Jamie was hooked up to receive Jesse's bone marrow at about 7:30 p.m.  Dr. Margolis called beforehand to say that "the numbers looked good" regarding Jesse's marrow.  In addition to the antibiotics, Jamie also received some Benedryl, which, as you can see from the picture, made him rather "comfortable."  It took about an hour for all of Jesse's marrow to be transplanted into Jamie's system.  He will now have his vitals monitored every 15 minutes for the next two hours and thereafter every half hour for the rest of the night to check for any type of adverse or allergic reactions.  It has been about one hour since the marrow was transplanted and he is still sleeping soundly.  Another uneasy night.

6/7/05 Tuesday 5:00 PM 5:00 p.m. Just received word that all testing on the marrow is now complete. However, Jamie needs to receive about one hour worth of antibiotics and then one hour of follow up before they can begin transplanting. Transplant is currently scheduled to begin around 7:00 and should take about an hour. Jamie will then be monitored closely for the next several hours to make sure no adverse reactions. Since the beginning of this storm, we (along with family and friends) have been praying for our rainbow to appear. It was a very nice feeling to look out Jamie's window and see one. Almost as if a sign that everyone's prayers had been heard. It brought on a whole new meaning and we are taking it as a symbol of promising things to come.

6/7/05 Tuesday, 12:55 PM 12:55 p.m.: Jesse recovering very nicely. Now more alert and playing with brother Drew. Also getting his appetite back as he could not eat or drink anything before surgery. Ordered his favorite "Happy Meal" of chicken strips, french fries and a cheeseburger from the hospital cafeteria - a meal fit for a hero! Also received word that once he finishes lunch, he has been cleared to go back to the Ronald McDonald house. He will definitely be more comfortable and have more to do there. We will keep him overnight here just to make sure nothing comes up and then the grandmas will take Jesse and Drew back home. To this point, the only disappointment is that it does not look like Jamie and Jesse will get to spend any time together, which we were hoping for.

6/7/05 Tuesday 10:40 AM 10:40 a.m. Just met with Teri and Jesse. Dr. Margolis indicated the harvest went well and Jesse is recovering in his own room. Even though he looks a little groggy in the picture, he has already taken a couple of swings at the nurses. (For those of you who know Jesse, that is a good sign he is recovering.) Dr. said he expects to transplant into Jamie between 3 and 6 this afternoon. Will probably also release Jesse to Ronald McDonald House if recovery continues.

6/7/05 Tuesday 9:40 AM

9:50AM Update. Jesse was brought to the hospital about 6:30 a.m. without incident. Harvest was started about 7:40 and the procedure is scheduled to take about an hour and a half and then to recovery. Jamie started kind of slow this morning. He gets medicine for nausea about every 4-6 hours and you can definitely tell when it is wearing off. Just got another round so hoping he will start feeling better soon.

Update - Monday, June 7, 8:30 PM Well, tomorrow is the big day, "day zero" as referred to around here.  Our second little hero arrived safely and in generally good health about noon today. He has a slight cold which will not prevent or even delay the transplant.  Unfortunately, it did prevent the brothers from having any type of meaningful reunion, which they both were looking forward to.  They were able to see each other through the glass in Jamie's door and exchange some cards they made, but not able to play together. We have tried to explain to Jesse what is going, but at 3 1/2, it's just a little too much to comprehend.  Someday he will realize the significance of his actions and how fitting the label of "hero" really is. I will stay with Jamie tonight at the hospital.  Teri will stay at the Ronald McDonald House with Jesse, Drew and the grandmas.  I was able to spend a little time with Jesse and Drew this afternoon.  Teri will bring Jesse to the hospital around 6:00 a.m. tomorrow morning.  The procedure itself will be much more invasive for Jesse than Jamie.  He will be under general anesthesia so he will be asleep, however, they will have to penetrate the bones in his lower back and hip more than 100 times in order to harvest enough marrow.  He will obviously be in discomfort when he wakes, but he will receive pain medication and the doctor advised it has been his experience that donors this age are usually up and running around by the end of the day.  In fact, depending upon how he does, Jesse may not even need to stay overnight in the hospital. After the marrow is harvested, it will need to undergo a series of tests and procedures in order to prepare it to be transplanted into Jamie.  This will probably occur sometime late afternoon tomorrow.  For Jamie, this will probably be the easiest part of the whole process as the marrow is simply inserted through his central lines, just like all his other medications.  It will be the days that lie ahead which will present the biggest challenges. Again, thanks to everyone for the overwhelming support and for keeping two precious little boys in their thoughts and prayers tomorrow.

Update - Sunday, June 5th, 9:00 AM We are anxiously awaiting the arrival of Jesse and Drew on Monday.  Grandma Judy and Grandma Karen will hopefully be arriving around 2:30 p.m. Everyone's respective health will determine whether or not they will be able to visit Jamie in the hospital.  As of yesterday (6/4) Dr. Margolis put him on "Phase 1 Isolation" which means everyone except Teri and I has to wear more protective apparel. As the chemo continues to do its job of depleting Jamie's marrow and immune system, more and more stringent precautions will be imposed.  We are keeping our fingers crossed Jamie will get to see his brothers and grandmas on Monday. I will visit with everyone in the afternoon and then stay with Jamie in the hospital Monday night so Teri can spend some time at the Ronald McDonald House with Jesse, Drew and grandmas before the much awaited "Day zero." Jesse stayed there earlier (see pictures) and has had a good time.

Update - Saturday, June 4th

My first night with Jamie went smoothly.  Even though you are up every hour to assist with going to the bathroom, medications or to just scratch his back, nothing out of the ordinary last night and he actually slept  very well in between checks. Day -3 found Jamie in much better spirits than yesterday.  He had a lot more energy and played almost nonstop with his new toys.  Also, his appetite was much better (as the attached picture indicates) as he ate at all three meals, compared to yesterday when the only thing he ate all day was a little soup last night.  Our only struggle continues to be getting him to take his oral meds, but we have now implemented a sticker chart and prizes and that seems to be working well for now. I attached the helicopter picture because they fly in and out fairly regularly and Jamie enjoys watching them.  He also enjoys when Teri or I read to him all the encouraging and supportive messages posted on the site.  It is truly inspirational for us to receive so many kind messages, they really are making a difference for us--Thank you all! Tom

6/3/2005 Update 8:00 PM from Tom Day -4 from the HOT (Hematology, Oncology, Transplant) Unit saw its share of ups and downs, as will be the case for the next few months.  Medicines are starting to slow Jamie down and no appetite today.  Unfortunately, there are some medicines that cannot be administered through his IV and he must take them orally.  One in particular tastes pretty bad and we tried a couple of times but Jamie just couldn't keep it down.  Talked with Dr. Margolis about the situation and he will not make Jamie take that particular medicine for a while until he figures out if there any alternatives.  Other than that, the Dr. is happy about all the lab results and how things are progressing.  We shall see what tonight brings as tonight is my turn to stay.  Teri advised not to expect much sleep as the nurses come in to check Jamie every hour which wakes him up. On a brighter note, Jamie received his favorite Batman and Spiderman balloons from his brothers and also received a wonderful box full of toys, a LeapPad and book from all his classmates and teachers at Seton School.  Jamie really enjoyed looking at the book which contained pictures drawn by his classmates and nice messages.  We then had a nice time playing with his new toys, which is a nice distraction for everyone.  Otherwise, a pretty calm day (which is good)! P.S. I have mentioned Dr. Margolis a few times in my updates. I don't know if you have looked at www.devenstrief.com but they have a link that gives a little background on Dr. Margolis.  Thought maybe people would be interested in that since I will probably be talking about him a lot. BRAD NOTE: You can find 2 new links on our "Links" page. 1 will take you to Deven Strief's page. The other will take you to the information on Dr. Margolis Tom referred to.

6/2/05 Messages Arrived at the hospital a little after 6:00 a.m. to begin day minus five (count down to day zero which is transplant day). Jamie (like his dad) is not a morning person so not very cooperative with staff. Throughout the day he received round after round of drugs, both through his IV and orally (which we struggled with today). We observed the expected side effects of drowsiness and irritability, but fortunately no nausea. Intermittently, the clouds would break and our playful Jamie would shine through. Teri and I are prepared to handle the forthcoming hostility, but those glimpses of happiness will certainly help carry us through the process. At one point, a hospital dentist came in to perform an experimental light procedure. It was initially developed by NASA for astronauts and radiation but is now being experimented on patients receiving chemotherapy. It has shown significant success in reducing mouth sores on such patients and is a simple procedure wherein a high-energy light is shown for 71 seconds on each side of the cheek. The dentist came in late in the day so we did not know what to expect, but Jamie was not only very cooperative, but seemed to enjoy the process and let me take the attached picture shortly after it was completed. We will rotate spending the night at the hospital and it did not come as much of a surprise that he wanted his mom with him the first night. We shall see what tomorrow brings.

6/1/05 Update From Tom

Had another good day today.  Went to the zoo and the weather was great.  Jamie is still very active and in good spirits but starting to ask about his brothers.  We took some good pictures (above). They include Jamie showing off his empty space where his tooth used to be (he was very excited about the tooth fairy and woke Teri and I up @ 3:30 a.m. to show us his money!) and looking at his favorite animals which were the bears.  We had a very nice morning. Then to hospital at about noon where we met with Dr. Margolis who advised all tests are now in and confirmed and we are ready to proceed as planned.  There was one final test that had to be sent to New York to rule out another type of anemia which took about 10 days.  That test just came back so the diagnosis of Aplastic Anemea has now been re-confirmed.  We are to be at the hospital @ 6:00 a.m. tomorrow morning (6/2) to begin chemo.  The transplant is scheduled for June 7th which the Dr. refers to as day zero, so we start tomorrow as day (-5).  It's going to be a restless night.

5/31/05 PM Update from Tom

We arrived at Children's Hospital about 12:30 this afternoon. We were slightly delayed as Jamie lost his first tooth in the van and we had to stop and look for it. Luckily we found it and he is looking forward to the tooth fairy for the first time. He is in very good spirits again today and feeling good. Had some blood work done, platelets were high enough that he did not have to get a transfusion so a pretty easy day. Took Jamie to his favorite restaurant here (Red Lobster) as he loves shrimp. Appetite still good. Back at Ronald McDonald house he has been non-stop playing in the playroom, game room, computer room etc.. We are trying to enjoy every moment of play as we know that will change pretty drastically in the coming days. Tomorrow we don't have to be at the hospital until 11:30-12:00. He is scheduled to get a red cell transfusion as Dr. Margolis wants his hemoglobin up for the start of chemo on Thursday, which we are scheduled to start right away in the morning. Dr. indicated he will be aggressive with use of drugs to reduce sickness but will likely make him very drowsy. I guess sleeping is better than nausea, but will be tough watching such an active and happy little boy not be himself. Next few weeks are going to be rough, but I have prepared myself mentally (as best I can) and am ready to start down the path of treatment and recovery. Obviously, things will have to get worse before they will get better, but we are encouraged by the facility we are in and the high success rate experienced by Dr. Margolis. Will keep you posted.

5/31/05 Back to Milwaukee

Today Tom, Teri & Jamie head back to Milwaukee as planned. Grandma Karen will stay with Jesse and Drew. Jamie will now be admitted and begin Chemotherapy on Thursday. Grandma Judy will take over later in the week on “Boywatch”. The grandparents will bring Jesse and Drew to Milwaukee next Monday, June 6th and if all goes according to plan, will perform the transplant on Tuesday, June 7th. Our hearts are also heavy today as we learned of the passing of Karen’s mom (Teri’s grandmother). It was a long road and this is a blessing – but that doesn’t make it any easier. We will be thinking of you.

5/28/05 Weekend at Home Jamie is home and has more energy today - so they will not be going back to the hospital today (see last entry below) and will get to have a nice weekend at home. Tom & Teri's friends have organized the first fundraiser, June 24th, so check out the "Fundraiser" link at left for more information. Have a Great Weekend!

5/27/05 Home for the Weekend

The Strakas are home for now. I just got off the phone with Tom – and as expected – everyone is exhausted. Jesse did well in all of his tests and the results are all on track. Jamie has had a lot of tests, none very comfortable, and didn’t really sleep in the car on the way back to Iowa. Hopefully, after a good nights sleep in his own bed, he will be back to his old self in the morning. If he is still fatigued – it will be back to the hospital in the morning as they just can’t take any chances in his fragile state and need to keep him healthy in order to perform the transfusion. Will hopefully be a relaxing weekend at home, then laundry and packing for 2 month in Milwaukee. Tom spent some time in the office today – and I will just go ahead and thank Bob and Warner for him! I don’t think he could possibly work with more supportive and understanding people. It goes so far when you have people around who are so caring and understanding – so I thank you all. – Brad

5/25/05 Judy's Update

Today Jesse was to have tests to make sure that he is healthy and will not be introducing anything unhealthy into Jamie via the transplant.  Jamie was to have a CAT Scan and other tests including blood work and electocardiagram  I talked to Tom tonight and he said things went pretty well.  Jamie seems to be getting used to all these medical procedures and is pretty cooperative.  Jesse did well, too, all things considered.  All results are not back, but looks like everything is ok for transplant.  One hitch, is that Jamie will have to have another bone marrow aspiration on Friday.  Just seems like, except for double match,  he is not having a lot of luck here.  In Feb. his bone cell count was 70% which was low, but not critical.  The last test in Iowa City showed 10% which was not good and led to the diagnosis of Aplastic Anemia.  The test they took in Milwaukee showed 30% so now they have to do another one to see where he really is.  They will take bone marrow from 2 spots and see how that looks.  Thankfully, they will give him a little anesthetic for this procedure.  If there would be any chance at all that his marrow was starting to work, they would never do a transplant.  Dr. is not very hopeful of that as his blood counts were very low today.  He received a platelet transfusion, but they really want to hold off on the whole blood, as the more of those he receives the more chance there is of a transplant rejection.  This weekend will be very tense, as his white count (nitrifies) I believe or something like that are extremely low.  500 is normal.  200 to 500 is a worry and his is at 75.  They will have to be so careful not to expose him to any kind of infection.  I think I would feel better if he would just stay there, but know this will be his last chance for a long time to be at home and with his whole family.  So our prayer right now is to keep him healthy and free of infection until he can get back to Milwaukee on Tues.

5/24/05 Jamie & Jesse Get More Tests

Today the Straka's head for The Children's Medical Center of Wisconsin in Milwaukee for what will be a lot of testing to assure Jesse is healthy and ready to begin the process to donate bone marrow. Jamie will have a Cat-scan (pray to the God-of-Holding-Still for this one!) as they prepare for the transplant on June 7th. The family will stay with the great people at the Ronald McDonald House and be home for the Memorial Day weekend. Jamie will begin Chemotherapy next week and we will all prepare for the side effects that brings. We will all be strong as this will be one of the big mile markers. Right now Jamie is a happy go lucky kid and you would never know anything is wrong. The side effects of Chemotherapy will bring about all of those cues (hair loss, sores, nausea) that force us to realize how serious this is. But we all understand this and we will all be strong for Jamie. Today, as they begin the next of what will be several 3+ hour drives to Milwaukee (this time in 2 cars) - everyone is just really happy the mini-van now as a DVD player and the kids are excited about Jurassic Park!

5/24/05 Site is Open Welcome to our update site. Please check this page often as we keep you update to what is going on.