10/7/09 Update The labs were all done on all boys for the retake of the tests that we sent to Vancouver so we are still waiting on those results again. Dr. Margolis called us yesterday and said that the Dr in Vancouver finally called him back and he was on vacation or something for 6 weeks. He is going to be looking at the boys results very closely when they come back. We will explain more in detail what happens with all the labs when we talk to this DR. Jamie's platelets dipped a bit to 25 this month. He is not showing any signs of bleeding or brusing so we are to wait another month to get his labs again. Until then... the waiting game is still on and we are just going about are normal routines.. 9/13/09 Update Hello to everyone- Many of you have been asking about the test results of Jesse's ad Drew's tests they did over a month ago. We have also been waiting just like everyone else. I finally talked to Dr. Margolis this past Tuesday and he had the results but feels there was some false readings on them. He has been trying to contact Vancouver but feels this person has been on vacation and just very busy so we are still waiting on that conversation. We will probably be redoing these tests to see if it comes back differently and again we will wait..... This is the only lab that does these extensive tests so we hae to stick with them and hope for some accurate results. Jamie is doing just fine playing fall baseball and now basketball. He seems to be a healthy active 4th grader doing normal day to day activities with no problems. We will get his monthly lab around the 20th and hope for no drops in his platelets and any other area. Just to remind you...if Jamie's platelets get any lower and he would require a transfusion of platelets, Dr Margolis says this is when we will take action. Most likely we will start preparing for a Full Transplant at that time. His platelets were at 36 (normal 150-450) last month. Transfusions take place when the numbers are between 20-25 and the patient is showing signs of bleeding and brusiing. We just pray they do not drop and somehow increase for the next lab draw. Thanks, The Strakas 8/24/09 Update I got Jamie's labs in Dubuque and all counts are in the normal range except for his platelets again. They are about the same as last month so we are going to wait another month and due a draw then. We have not gotten the results of the tests that Drew and Jesse had yet but will let you know when they come back. Those results will let us know whose bone marrow we will use if Jamie goes to transplant again since they are both 10/10 perfect matches. Meanwhile, Jamie and Jesse started school last Thursday and little Drew starts Pre-K today. We will see how he does all day getting back into the swing of things since he has been home all summer. Jamie is playing fall baseball and will also be starting basketball in September. Jesse and Tom have b-days this week so we will be celebrating them with family and friends. Mom and Dad are off to Jimmy Buffet this weekend in Alpine Valley so we are hoping for nice sunny weather and a great time. We will update soon. Thanks for all your prayers Teri 7/22/09 Update Dr. Margolis called very early this morning and apologized for the delay from his vacation. We discussed how well Jamie was doing at this time. He is a very healthy and active boy swimming, playing baseball, and playing with friends. He is showing no of signs bleeding or bruising so it is very hard to know when to take action. We discussed the new medications that are a year old but his colleagues are not using any because they are too risky. They did say that a transplant was the best way to correct Jamie's platelet problem. The big question is when we should do this if necessary. Once Jamie would need a platelet transfusion (not transplant) through an IV then we would start to go forward with the bone marrow transplant. He is 30 now (150-450) Very close!!! They usually do transfusions between 10-20 and only last 7 days. Jesse and Drew are perfect matches to Jamie so next week we are taking them up to Milwaukee for a special test to see if Drew is a closer and better match. There is a blood test that only one lab in Vancouver does that breaks all the cells down and they can compare different areas of their DNA. We used Jesse for the donor in 2005 so they thought they would compare Drew as well in hopes that he may show something different and closer to his brother Jamie. The results would take up to 2 to 4 weeks to come back. Dr. wants this test done now so we have them if we go to transplant. Sooo.......if Jamie is still holding his own after the results come back---we may try another anti-rejection med to see what that does to his platelet count. The downsize is that it might bring all of his other counts down but a chance that his platelets might go up so it is just an option at this point. I hope this is explained clear enough to understand. Time will tell!!!!!!!!! I will update more next week. I have to break the news to the younger boys that they are going to get a poke like their brother Jamie. I wonder how that will go......... Thanks for all your thoughts and prayers. 7/20/09 Update Ok Just heard from Milwaukee about Jamie's labs. We went in yesterday afternoon to get the monthly lab. 4.5 (4.0-11.0) 30 (150-450) low 11.6 (11.-14) Anc 2250 I talked to Heather and she said Margolis is back today from Vacation and he will hopefully call sometime today or tomorrow. Platelets are still stable (transfusion free) so my guess is we will wait another month to see what happens but not sure. Teri 7/7/09 Update We finally received a call from Dr. Margolis today. The news was not totally unexpected, but hard to hear just the same. Dr. Margolis feels another full bone marrow transplant needs serious consideration. If done, the chemo would be more intensive than last time to ensure Jamie's cells are completely wiped out. Jesse would again be the donor. It looks like there are a certain group of cells which are still about 65% Jesse and 45% Jamie, and they appear to be the ones causing the problems. Dr. M will be attending a conference on bone marrow failure this week in Indianapolis. He will be one of the presenters and it will be attended by specialists from all over the country. Dr. M indicated he will be discussing Jamie's situation with these other specialists for all possible options. One option he will be inquiring about involves some new medications that have come out in the last year designed specifically to boost platelet production. If you have been following Jamie's web page, you know that all of his blood cell counts have been holding steady, except his platelets which continue to drop. Dr. M wants to find out from other doctors who have used these medications what, if any, level of success was achieved. He cautioned us that these medications are extremely expensive, highly regulated, and little is known about any long term effects. Dr. M was also very straight with us that even though he will be discussing Jamie's case with other specialists, he was very certain that the consensus would be another bone marrow transplant. He graciously encouraged us to pursue a second opinion, but where do you go when your doctor is the one other doctors consult on this disease? We have never doubted the care Jamie has received in Milwaukee and we are not likely to start now. Probably the most frustrating part is that Jamie looks, feels and acts wonderful. He is not showing any symptoms at all and is fully enjoying summer with baseball, swimming, and hanging out with his friends and family. It is very hard to accept the severity of his situation when outward appearances are so "normal". Dr. M was sympathetic to our feelings in this regard and agreed that as long as Jamie was not showing any symptoms or feeling sick, we could wait to take any action. However, if Jamie does start to show symptoms (petechaie, bloody noses, lethargy, etc..) we need to begin some type of treatment immediately. Not sure what else to say at this point. Still trying to digest all of the information we received and figure out a course of action that is in Jamie's best interest. Thanks for checking in and as we have stated numerous times before, the thoughts and prayers we receive are comforting and much appreciated.

6/22/09 Update Jamie and I went up to Milwaukee on Sunday becasue of the early appointment we had and stayed at the Ronald Mcdonald house. We also went to one of his favorite restaurants---Red Lobster. The plan in the morning was to get a lab first, go to clinic and then have the short surgery at 10:00. Everthing went smooth except the lab draw when the tech could not get a good vein in his arm with the cream on it. We had to switch to the other arm and Jamie got all excited and hot and about fainted. We talked him into it and finally 25 min later we got the 7 tubes of blood they needed. whew!!!! His numbers were up a tad. Platelets 31 (Last week 24) (normal 150-450) wbc 3.9 (Last week 2.9) (normal 4.0-12.0) hemo 12.2 (Last week 11.1) (normal 11.0-14.0) Lynette said all other counts looked great too but not to get too excited over it. This biospy will tell us more about his bone marrow and we should know something at the end of the week when Dr. Margolis will call. We will update again. Please also pray for our friend Deven Streif who is now having a transplant in Milwaukee. Thanks for all your prayers 6/13/09 Update Well we got local labs for Jamie this Thursday for his monthly draw and the counts are not good. Besides the platelets dropping, everything else has too. Platelets 24 (150-450) WBC 2.9 (4.0-16.0) Hemo 11.1 (11.-16.0) Jamie is not sick and has no signs of bloody noses. He is very active and enjoying the summer. It is very hard to beleive that his counts are this low due to how Jamie looks and that he plays baseball and swims. Friday Dr. Margolis called me himself and he stated that he wants to do a bone marrow aspiraton and biospy to look at what his bone marrow is doing and to see how much is Jamie and how much is Jesse. He will have this surgery on June 22nd in Milwaukee. This is where Dr says we should start and then with the results we can choose an option on how to make Jamie get better. I will update you after the surgery. Need some prayers--- The Straka's 5/11/09 Update Hello to all- Well we got Jamie labs in Dubuque today and they are listed below. Everything is in normal range except his platelets. Dr. Margolis looked them over and has decided we just need to wait and see how they do over the next month. Jamie looks and acts like every boy his age so it is hard to notice that he has these low of platelets. We will just watch for bloody noses and heavy bruising over the next month and hope they increase. Jamie will start the summer playing baseball, swimming lessons and golf lessons. He plays for the Peosta Braves kid pitch baseball team and Jesse is playing on the Peosta Cubs in D league while Drew has not started t-ball yet but really wants too. We will keep everyone posted. WBC 4.1 Hemo 12.1 Platelets 31 (150-450 normal) ANC 2000 Thanks for your prayers 4/15/09 Update Hello to all! We are getting local labs once a month now. This Monday Jamie's labs were about the same as last months which is good to hear. We do not want his platelets dropping any further causing him to require a transfusion. The only thing below normal are his platelets. WBC 4.3 (4-11) Platelets 45 (150-450) Hemo 11.4 (11-14) ANC 1935 Jamie looks great and healthy considering his platelets- so we are lucky in that sense. Baseball season has started and he is very excited to play and for the warm weather to arrive. Jesse is playing D league and little Drew is also signed up for T-ball so we will be busy 3 nights a week for sure. The whole family had a great time in Florida swimming, riding the golf carts and visiting with Grandma, Grandpa and Uncle Brad. The weather was sunny and warm every day so we were just relaxing and swimming most of the time. We will post some Florida pictures soon. Thanks for checking in. The Straka's 3/21/09 Update Jamie had a local lab this Monday and all counts are still stable and about the same as two weeks ago. Milwaukee wants us to try labs in a month unless we see that Jamie is sick or showing symptoms. His platelets are still way below normal but it seems that they have stayed at this point for awhile. (43---(150-450). Time will tell. We are headed to Florida this week to see Grandma and Grandpa Davis and also Uncle Brad. The kids are so excited and we are praying for warm sunny weather. Jamie has started practicing baseball and staying busy with school and friends. We will update when we return. Thanks for your prayers and checking in. The Straka's 3/4/09 Update This week Jamie's counts have stayed pretty much the same. His hemoglobin did go up to normal range so that is good. Platelets were 49 WBC 4.0 Hemo 11.5 ANC 2100 We will just have to wait and see as each week goes by and pray for some improvement. The whole family will be going to see Grandma and Grandpa Davis in Florida at the the end of the month so we are hoping the warm sun will do his body good. All the boys are very excited and are counting down the days. This will be Drew's first trip on an airplane so we are also crossing our fingers for a smooth and painless flight. Thanks for checking in. 2/23/09 Update We finally got a chance to talk to Dr. Margolis this morning. We discussed many options as what to do and when do something about Jamie and his counts. He feels Jamie is living a good quality of life that includes going to school and playing basketball. He is not acting sick and does not feel sick so while he is hanging in there with an ANC of 2200 (ANC Means he is producing cells) that we should wait it out. His platelets are 48 but if they were to fall each week and Jamie would require a transfusion of platelets --that’s when we would need to do something. The first choice would be to do another transplant with the use of a little radiation this time. We really do not want to go there again but if that is what will make him better than that is what we will have to do. Jamie will get another lab next Monday and we will pray for better and stable counts. Things are changing all the time so I hope I can make things clear for all to understand. Thanks for your prayers The Straka's 2/21/09 Update Hello to all Jamie did get his labs on Monday after school and they are lower again. I talked to Lynette (nurse practitioner) and she told me that she had a page out to Dr. Margolis to see what he wants to do. Well it is Friday morning and we have not heard anything so we assuming that we will just go another two weeks to see if they drop anymore. Platelets 48 (150-450) WBC 4.1 Hemo 10.5 (11-14) ANC 2200 Meanwhile Jamie has had a few bloody noses this week maybe due to low platelets or could be the dryness in the house. He looks very healthy and will be playing in a basketball tournament this weekend with his buddies. We also hope to head down to see his cousin Dalton in Moline play basketball on the varsity for Galesburg. Go Dalton!!! We also have more snow coming this evening!!!!!! Thanks for checking in and as soon as we know more we will update. The Strakas Happy Birthday Teri! --Brad 2/4/09 Update Hello to all- The results this week for Jamie are not what we were hoping. They are as follows: Platelets 53 (150-450) Hemo 11.1 (11-14) Wbc 4.6 (4.-14) Anc 2200 Jamie looks great and is acting just fine. Milwaukee said we should just wait another 2 weeks and see if the trend is really on the down slope of counts. Tom and I will have a phone conference with Dr. Margolis in a couple of weeks to see what the options are for the next step. We will just hope for some kind of jump in the platelets. This weekend Jamie will be attending our Make-A-Wish Gala with Tom and I. He is very excited to go. There will be about 20 kids running around so hopefully he will meet some new friends. Uncle Brad sent lots of great raffle items, Aunt Leah, Grandma Judy and Grandpa Tom will be there to support this great charity that has granted Jamie's wish in 2005. Thanks again for checking in and praying The Straka's 1/22/09 Update Hello to you all- We have received Jamie's DNA results back and they are the same as they were before the boost. His whole blood is 100% Jesse but the T-cell compartment is 65% Jesse and 35% Jamie. This compartment is the most important since we want to see more of Jesse's t-cells than Jamie's developing. Milwaukee said time will tell what happens with his counts. We will do local draws every two weeks now and hope for an increase. Meanwhile we are sailing through the winter with Jamie playing basketball and Drew and Jesse being the crazy boys they are! Hope all is well. Thanks Teri 1/6/09 Update Jamie went to the local lab yesterday for his draw and they did an extra 3 tubes of blood for the DNA test. We will find out the results early next week on those. His CBC was as follows: Platelets: 67 (150-450) (last week 78) WBC: 4.7 (4.0-10.0) (last week 2.4) Hemo: 11.2 (11.0-14.0) (last week 12.4) Milwaukee is not worried at all that there is a drop but they will be concerned if it turns into a trend. We will just pray that everything kicks in and starts working again. Time will tell!!!!! Thanks again for checking in and we hope you all had some great Holiday time with your families. The Straka's