12/30/08 Update Happy New Year! Jamie got his usual weekly draw on Monday and every thing is moving slowly upward. Platelets 78 (150-450) WBC 2.4 (4.0-10.0) Hemo 12.4 (11.0-14.0) Our nurse practioner (Lynette) told us they are still happy things are going up and that next week we will do a DNA test again to see if Jesse's cells have over taken some of Jamie's nasty ones. We will do this locally and they overnight it to Milwaukee to get the results. She also said we will be in the clear after next week from graft vs. host and that we will be spreading out the lab draws. We also celebrated Jamie's 9th B-day on the 29th. We had pizza with the family and then he had two of his buddies sleep over. Jamie's 4 year old brother Drew, hung in there all night with the big boys as well. Thanks for checking in and stay warm. The Straka's 12/23/08 Update Happy Holidays to everyone. Things are very busy here with all the holiday parties, plus Jamie and Drew's birthdays thrown in. Another good week for Jamie's numbers as his platelets finally went up a little bit. We were worried as he has been fighting a cold, but for now Milwaukee is happy so we are happy! Safe travels to everyone. Platelets 74 WBC 3.4 Hemo 12.1 ANC 1900 12/09/08 Update Hello again. These Mondays have been coming so fast. Jamie's labs were still good and stable this week. WBC 4.1 normal Hemo 12.1 normal Plat 68 not normal 150-450 is normal Lynette said she has never had a patient have the same platelet number three weeks in a row. The platelets are the only thing that has not gone up lately but Milwaukee is still very satisfied with how he is doing. The kids and I are home from school today due to a ice/snow storm we are having. It looks like we are going to have a long winter. I might need a visit to Florida soon. Until next week. Teri 12/04/08 Update Jamie's numbers this week were stable and not as high as we were hoping. Platelets 68 WBC 3.1 Hemo 11.0 We have not heard from Dr. Margolis but my hunch is we will just wait and see what next Monday brings. They wanted to know if he was sick with a cold or had any other symptoms of a virus but Jamie seems to be pretty healthy right now. Winter has arrived with several inches of snow in Iowa. Jamie has been out snowboarding every night this week with his friends. Brrrrrr!!! Thanks for checking in Teri 11/27/08 Thanksgiving Update Hello everyone and Happy Thanksgiving!!!! Jamie's counts this week are: Platlets--68 (150-450 normal) last week 64 WBC----4.6 (4.0-11.0 normal) Last week 4.2 Red----10.9 (11.0-!4.0 normal) Last week 10.6 His blood count is all going up slowly and Milwaukee is still very happy with the progress he is making. We will continue to do labs every Monday locally until the end of December if everything continues to go up. They will redo the DNA test in a couple of weeks since the last one we were told was not accurate. We are very thankful this year for Jamie's health and all the wonderful people that we have praying for him. We hope you have a safe and healthy holiday. Until next week....... Thanks everyone for all your support!!!!!! The Strakas 11/18/08 Update Hello everyone---Another good report this morning!!! Jamie got his labs drawn locally after school yesterday and we found out this morning that his platelets have jumped up to 64. His hemoglobin was 10.6 and WBC were also stable. Lynette (our nurse practitioner) was very excited about the labs and said we would find out later in the week about the DNA results. Thanks for all your prayers!!!! Keep them coming!! The Strakas 11/11/08 Update Jamie had another lab last night and we received the results today. His numbers appear to be moving in the right direction, which is great news. They moved up from last week: ------------- Last Week ---- This Week ---- Platelets: ---- 34 ----------- 56 -------- WBC: -------- 4.1 ---------- 4.5 ------- Red Cells: -- 10.2 -------- 10.3 ------- ANC: -------- 1500 -------- 2400 ------- This is the first increase we have seen in over a year and a very good sign, especially since we stopped his cyclosporin completely last week. Jamie's nurse practitioner called and was most excited about the increase with the absolute neutrophil count (ANC). The ANC measures the number of white blood cells (WBC) that are neutrophils. Since neutrophils have a life span of about 3 days, any increase tends to show the bone marrow is producing cells. Although very good news, we were cautioned not to get too excited (we've heard that a lot in the last 3 years) as it has only been two weeks since the stem cell boost and it will take another 2 to 3 weeks before they can determine if Jesse's cells have engrafted successfully. So.. we will continue with the waiting game, feeling some relief today, but trying not to get too excited. Thanks for the continuing prayers, they appear to be working again!

11/4/08 Election Day Update (more numbers that count!)

Jamie had his first blood draw on Tuesday. After the stem cell boost we also decreased his dosage of cyclosporin. The counts today were unchanged, which is good. They did not go down despite the decrease in his meds, which surprised me as he had two bloody noses and some bloody gums since returning home. Because the counts did not change, Dr. Margolis now wants to take him off the cyclosporin completely. He has been on this for the last year, so this will be another very anxious week as we wait and see how he reacts. In some unrelated news.... earlier this summer we had to put our gentle and loyal beagle to sleep. Sydney appeared in many website pictures over the years, but she was 12 years old and starting to suffer pretty bad. After we returned from Milwaukee, Teri and the boys "rescued" the newest member of our family from the humane society. Jamie named her "Chloe" and they think she is a one year old beagle terrier mix. She is also very gentle and acclimating quickly to our home. Thanks for the continued support and we will let you know what numbers next week brings!

10/27/08 Stem Cell Boost

Well we are back home and the brothers are back together once again. Jesse made it through his surgery like a trooper, and we are praying his cells can work some more magic. Jesse's surgery took about an hour and the extracted cells where ready to be transfused into Jamie about a half hour after that. After the initial trauma of getting the IV line set up in Jamie (he still struggles with that a great deal), he just had to kick back while the blood cells transfused, which took about an hour. He was then monitored for another hour after that to make sure there was no allergic reaction, and then we were sent on our way. Jamie will have blood draws locally every week to see if there are any changes in his counts (pray for increases!!) and then we will do another "sort" in about 3 weeks to see what the percentages are of Jesse's cells vs. Jamie's. Dr. Margolis gave us about a 50/50 chance of success, but indicated it is really hard to give an accurate success rate as everyone responds differently, but we had to ask! If it does not work, then we will have some serious decisions to make, such as trying another bone marrow transplant. That would involve going through chemo and months in Milwaukee again, so we are really hoping this works or some other options present themselves. Trying not to think about it too much at this point so that we can remain positive that Jesse's cells are going to pull through and save the day! Thanks for you continued support and prayers.

10/25/08 Update

We will be heading to Milwaukee on Sunday with Jesse's surgery to take place early Monday morning. Once his blood cells have been tested, purified and processed they will be transfused into Jamie. We will give you an update after everything takes place, but wanted to send you some recent pictures of Jesse from a hike we took last weekend at the Mines of Spain. Since he will be enduring the most invasive procedures this weekend, we thought he should get the spotlight on the website.

10/20/08 Update

I just got off the phone with Dr Margolis. He has reviewed Jamie's records and believes it is time to do a stem cell boost. The boost is different than the transplant in that Jamie does not have to receive any chemo or even stay in the hospital. Jesse is the one who will have surgery again and they will take the stem cells from him, purify the cells and then transfuse them back into Jamie through an IV. We will even get to come home the same day if all goes well. Jesse knows from last time what he has to do and that he will not feel anything. The IV will be put in after he is out but I am sure he will be a little sore on the backside after he wakes up. The staff up in Milwaukee talked to both kids about what is going on so I think we are set to try this. I will be taking both boys up to Milwaukee on Friday for blood counts and evaluations. I will come home for the weekend and then depending on Jesse's surgery time we will go back up Sunday night or Monday morning. It will take approximately 6 weeks to tell if the boost will work. We are crossing are fingers that this will work. Thanks for checking in and we will keep you posted. The Straka's 10/18/08 Update Well we have not heard anything from Dr. Margolis yet. All we know is that the DNA test came back and it is still the same. 90% is donor ( Jesse) and 10% is Jamie's so that is a good sign. The nurse said Dr. M needs to dig into Jamie's case a little deeper and as soon as he comes up with a plan -we will know to. Jamie broke his right arm in a BB game on Monday so he has a waterproof cast on now for 6 weeks. It was one of his last games so he is not too upset. Well as soon as I know anything we will let you know too. Thanks for checking in Teri

10/9/08 Update

Hello To all- We are back into the school routine now with Jamie in 3rd grade , Jesse in 1st and Drew (3) goes to pre-school two days a week. Jamie definitely gets more homework this year so we are staying on top of that. Jamie got his local lab on Tuesday and they Fed EX it up to Milwaukee for a DNA test to see how much of the bone marrow is still Jesse and what is his own. We will find out the results of that in a couple of days. We did find out his blood count though which is still dropping. WBC 4.2 4.0-14.0 RBC 9.6 11.0-14.0 Platelets 34 150-450 We really do not know what is going on here yet. Everything is just going down slowly. He still is on the cyclosporin twice a day at 08 dose. We just need to cross our fingers and hope for a huge turnaround soon. I will let you all know our game plan when we talk to Dr. MArgolis. Thanks for Checking on Jamie. The Strakas 9/6/08 Update Hello to all!!! School has finally started and the boys are getting back into a schedule. Drew goes to preschool and Jesse is in 1st grade. Jamie has his labs done once a month now locally until we visit Milwaukee in October to do another DNA test. The platelets are still hanging around at 44 (140-450 normal range) with all other counts in the normal range. We talked with Dr. Margolis and he says we should just wait a little longer to see if the anti-rejection medicine kicks in. Jamie takes that twice a day and also magnesium pills. He is very active and doing what every other boy his age would be doing except for contact sports (football). He seems to not be bothered with that though since basketball is around the corner. We will just have to cross our fingers and hope the platelets jump back up soon since the winter season upon us. Well thanks for your prayers again. The Straka's 7/16/08 Update Jamie and I went to Milwaukee on Monday to have a clinic visit and get labs. It has been three weeks since the last draw and the numbers are still the same. The platelets are still below normal at 44 (150-450). All other counts are in the normal range and we still have no explanation as to why the platelets are low. We are still waiting on what to do next from Dr. Margolis who is at a conference all week but should know more by the end of the week on what our next step will be. Summer is going great. Jamie will finish baseball this week with a tournament on the weekend. Jesse and Drew are also staying quite busy with swimming, golf and pestering each other. Do all brothers fight this much? Anyway not complaining though. Have a good week and I will update in a couple of days. --Teri NOTE FROM UNCLE BRAD: Duh Teri! HELLO! To your comment "Do all brother's fight this much?" Um . . .yes. But don't worry - they'll be great friends by their mid 30's. Hang in there. ;-) 6/28/08 Update (posted 7/8/08) Hello everyone !!! I am so sorry for not updating in the last couple of weeks. I have had several people asking about Jamie and how he is doing. We have been switched to getting labs every two weeks instead of weekly. We went Milwaukee at the beginning of June marking his 3rd year anniversary since transplant. His labs were< platelets 54 (150-450) Hemoglobin 11.6 (11-14) Wbc 4.5 (4-14) Everythng is normal except for his platelets so we will continue to do the meds and it may take some time before see change. We will not go ahead with his immunizations due to some of them are live virues and they may hinder his counts. Jamie is enjoying his summer playing baseball, golf and swimming. He is having a great summer with his brothers. Thanks for all your prayers. 5/28/08 Update Jamie's labs this week came back the same except for his Hemoglobin was below normal now. His counts are: platelets 48 (150-450) White BC 3.8 (4.0-11.0) Hemoglobin 10.6 (11.0-14.0) ANC 1200 Jamie seems to be doing fine and can not wait until school is out. We will be going back to Milwaukee on June 9th for a clinic visit and to see Dr. Margolis. The kids will be busy this summer with baseball, golf, and swimming. Drew loves to go wherever the older two are and he wants to go swimming the most. We just need the weather to get warmer. Until next week! Thanks for checking in and thanks for all the prayers. 5/28/08 Update Well it looks like this is going to be a slow process for Jamie's platelets. They were 46 yesterday. Average (150-450). I talked to Dr. Margolis and we are to continue the medicine and continue to get labs locally every Tuesday. All other counts are in the normal range so we do not have to do the breathing treatments Jamie once had to do in the past. We would also ask you to pray for our friends the Kramer family who lost their daughter in a rollover accident this Monday night. They are going through a rough time. God bless. 5/14/08 Update Hello again--- I took Jamie in for his lab this morning and his platelets have jumped to 49 from 33. ( yeah) This is a good start and hopefully they continue to increase. He is still taking the anti-rejection medicine twice a day and will continue to do this until we get back to normal ranges. We will also get the DNA results in a few days. Until then keep praying!!! Thanks The Straka's 5/8/08 Update We have the results from Tuesday lab. The platelets are hanging on at 33 so we are going to continue with the medicine for another week. Jamie will get a lab next Tuesday morning and they are going to a DNA sort to see what is going on in there. Jamie has his first baseball game this week so he his excited for that. Until next week. Thanks for checking!!! The Straka's 4/29/08 Update Hello All!! I took Jamie to Dubuque this morning before school to get his lab done. They faxed the results to Milwaukee and they have come back the same. His platelets are still around 34 (150-450) WBC 3.8 and Hemoglobin 12.5. Platelets are still well below normal but Dr. says since they haven't dropped we will give it another week. So that is what we will do. We do not want to put Jesse through the surgery unless it absolutely necessary. Jamie will continue to take the medicine twice a day to suppress his bad cells. The waiting game goes on. Thanks for all your prayers and we will update next week. Have a nice weekend!!!

4/28/08 Update We are all back home safe and sound. Brad very accurately translated our 3-4 minute telephone conversation, which is not always easy when there is so much information being exchanged. As Brad correctly stated, there wasn't enough of a drop in Jamie's numbers to justify putting Jesse through the harvesting procedure. We will do another local lab next Tuesday. If there is a "clear" drop, we will do the procedure next Wednesday. If there is a "clear" rise, we will do nothing but continue to closely monitor Jamie's counts. If there isn't a "clear" drop or rise, I told Dr. Margolis I was going to pull what's left of my hair out. He responded by saying what hair is not yet gray for him, now would be. In trying times, humor maintains sanity. On a lighter note, we felt both boys (and parents) could use a little distraction from the hospital setting. Not only were we able to go to the zoo, but some corporation (we do not know who yet, but plan to find out to send a "thank you") donated 14 skybox suite tickets for the Brewers game to the Ronald McDonald House. We signed up and got to go. It was an incredible set up and, even though the Brewers lost, we had a great time. Thanks to everyone for your prayers and all the wonderful messages of encouragement. We shall see what next week brings! --Tom 4/23/08 Update Just got off of the phone with Tom so will try to translate our conversation the best I can. As you know today they were doing more tests on Jamie to see if his platelets were still dropping. He has also been on Cyclosporine (a drug used to suppress the immune system) to see if his platelets would rise. If not, then the best course of action was for a stem cell boost done by operating on Jesse to extract more bone marrow. Today’s news from Milwaukee is that Jamie’s numbers are only slightly lower (from 36 to 33). This is not enough to warrant another transplant (at least not today). So the family is looking for tickets to a ballgame or the zoo! (A much better day for Jesse and his brother.) On Tuesday of next week Jamie will go in for a local lab (in Dubuque) and we will again see if his numbers have risen, dropped or stayed the same. If the numbers drop significantly: the family will return to Milwaukee and they will perform the transplant on Wednesday. If the numbers rise: hallelujah. We're in luck and they will continue a course of action which I assume would be with medication and observation. If the numbers are about the same or lower: well, then everyone has to start making some decisions. Most appropriate would probably be to go another week and see what happens. But it is a gray area at this point. SO! We have good news today and we will pray that those numbers continue to rise! Thank you on behalf of all the Strakas and all the Davis’ for your continued prayers and support. -- Uncle Brad 1/17/08 Update I took the boys up to Milwaukee for a pre-op exam for Jesse and a lab draw for Jamie this Wednesday. Everything went very well and the boys could not feel a thing with the lab draw- thanks to Emla (numbing cream) I put on them in Madison. Jesse saw a psychologist and had a physical to make sure he is healthy to go through with the surgery. Lynette and the psychologist were wonderful with Jesse and explained everything he was going to do and asked him several questions about why he has to do this. It brought me to tears when they asked him "what if you did not have the surgery what would happen?" He replied "then my brother might die." Jesse is pretty amazing and really knows what is going on and why his blood is good for his brother Jamie. The most important thing that they made sure he knew was that he would be asleep for the whole thing. Jamie's platelets came back at 36 (lower yet). Dr Margolis is still baffled by what is going on so we put Jamie back on the Anti-Rejection medicine twice a day for a week. We will check his numbers on Wednesday morning to see if this medicine helped. Jesse is still scheduled for surgery at 1:00 on the 23rd if the numbers do not change for the better. We will let you all know on that day. The boy's are really excited to stay at the Ronald McDonald House again. It is a very special and nice place that they loved back in 2005. They call it their favorite hotel and we are very glad that it is there for them to enjoy. Thanks for all your prayers !!! The Strakas 4/12/08 Update Jamie had his bone marrow aspiration and biopsy on April 9th. It was nice to see Heather and Lynette again, and Jamie actually smiled for the pictures. The procedure itself went fine, but Dr. Margolis would have to wait for the results until he could give us an idea what was going on and our options. Dr. Margolis called Friday evening with the results. It is always a little disconcerting when a doctor starts the conversation with "I'll start with the good news", as you now know there is bad news to follow. The good news is that there were no signs of leukemia. Also, the genetic split was still 90% Jesse, 10% Jamie, so it is not rejection, so that's good. The bad news is that Jamie's bone marrow is much less cellular than it should be. Dr. Margolis indicated that in a perfect world we would run a test to see if the aplastic anemia is returning, which is one possibility. Unfortunately, that test does not yet exist, so we are left with trying to figure out what is causing his numbers to drop and what do we do next. Margolis discussed what he felt the possible causes could be and the different options we could pursue. At this point, it is his strongest feeling that Jamie's marrow most likely never recovered from an earlier viral attack when he came down with walking pneumonia. If that in fact is what's going on, the safest procedure with the highest chance of sucess would be a "stem cell boost". The good thing for Jamie is that he would not have to undergo any type of chemo therapy like in a transplant. The bad thing is that the procedure would be exactly the same for Jesse as when the bone marrow was harvested the first time. With the other options not as safe or not as likely to be successful, we have decided to go this route, although we are deeply saddened/angry that this disease (or its after effects) is again negatively impacting the health of two of our boys. Teri will take the boys up next week for some pre-procedure tests. The procedure itself is currently scheduled for April 23 and 24. Please keep both boys in your prayers. 3/27/08 Update We took Jamie to lab this month and his platelets were lower yet. His were 52 and normal is (150-450). All other numbers were in the normal range but Dr. Margolis is a little concerned as why just the platelets are low. He scheduled a bone marrow biospy April 9th to see what is going with his cells. Jamie will be put under and will not feel anything except when they put the IV in. He maybe a little sore on his lower back but at least he will not be awake for the procedure. Jamie seems healthy and goes to school every day. We hope this is just the winter sickness all around him that is causing this. We will not know the results for a few days after so we will update then. Jamie and his Seton classmates are making their 1st communion on this Sunday. Grandma Karen is back and he is so excited to do this. Thanks for checking and we will update as soon as we hear anything. God Bless, Teri

2/7/08 Update Just wanted to let you all know about the results of Jamie's labs. Dr. Margolis wanted to take a closer look at the cells and also check out his DNA. He is still 80% Donor (Jesse) and 20% himself which so far has been working well for Jamie. The rest of the tests showed that everything else is stable and in the normal range which is good. His platelets were 77 (normal 150-450). They were a tad higher from the last blood draw so Milwaukee is hoping that they are on the way up and were just recovering form a virus or some form of a cold. We will cross our fingers and get a local lab in a couple weeks. The kids and I are ready for summer!!!! We have had so many snow days this winter that they will be going to school until Jun10th. Jamie will making his 1st communion at the end of March so he is looking forward to that. Grandma Karen will coming home for 10 days for the event and spending some time with family and friends. We will update after we get his lab. Thanks for checking in Teri 2/7/08 I mentioned in the last update that we would do another lab in about a month. However, since the last update Jamie has had two bloody noses. Nothing strikes more fear into the heart of a parent of an aplastic child than the dreaded bloody nose. There was no way we could wait another full month for a lab, so Teri took Jamie in for a blood draw. Fortunately, Jamie's platelets did not drop and actually climbed a little bit up to 71. Even though this was a relief, Milwaukee still instructed us to take Jamie back for another lab (Jamie was reeeal happy about that!) so that some DNA tests could be run. Dr. Margolis wants to see if the percentage of Jesse's cells have changed any. No results back yet, but will keep you posted. Thanks for your thoughts and prayers. 1/22/08 Update Due to Jamie's platelet drop last month, we did another lab again today. Unfortunately, his platelets dropped some more and are now down to 66. Milwaukee instructed us to take Jamie in to our local pediatrician right away to have him examined to see if he was showing any symptoms of a virus. This check up went fine as Jamie appears healthy in all other respects. He is not complaining of feeling sick, all other counts are normal, his appetite is fine, and he is as active as ever, so really kind of stumped right now as to what is going on. He will have to take it easy for awhile and can't play games in his basketball league, although he can still go to practice and sit with the team at games. We will do another lab in about a month and if his platelets go down again Dr. Margolis wants us back up to Milwaukee to do a bone marrow aspiration (extracting some marrow out of a bone in his back to test the cells). We are really hoping it will not come to that, but at least Milwaukee will put him under for this procedure, unlike Iowa City where he was awake and we had to hold him down. Sooooo, here we are again asking for help by way of some positive thoughts and prayers. A little more nervous than last month, but not hitting the panic button yet, as Dr. Margolis would have had Jamie in Milwaukee immediately if he felt something was wrong. As always, thanks for your support.

1/3/08 Update We hope everyone had a wonderful and safe holiday season. We are getting ready to get back into a routine after a very busy but enjoyable few weeks. It has been awhile since we updated as our December checkup was pushed back due to bad weather. Teri took Jamie and Jesse to Milwaukee on Wednesday for Jamie's check up. Most of his numbers were fine but his platelets were down to 88, which is as low as they have been since his transplant. Dr. Margolis was notified and met with Teri right away, which is good but also a little concerning as he does not always meet with us if Jamie's numbers are in normal ranges. Dr. M indicated to Teri that he is not worried yet. The "yet" has me a little anxious, but Dr. Margolis felt Jamie was still recovering from a bout of walking pneumonia he had earlier. This would explain why his other numbers are in the normal to high range. Nonetheless, he did request another lab in one month rather than three, and Jamie is not to use his new "healies" he got for Christmas until we know for sure why his platelets dropped so much. We had a great run of 12 months with no concerns at all, so really feel pretty good at this point that Dr. M is right, but we will still be glad to see those numbers go up a month from now. As always, thanks for your thoughts and prayers.