12/12/06 Update Jamie and I headed back to Milwaukee on Tuesday for his monthly appointment. The drive up was very stressful with all the fog that lingered throughout the day but we made it on time. The appointment however was excellent. His numbers were all in the normal range including his liver and kidney functions. Dr. M was very happy and will let Jamie continue to stay off the cycosporin. We will cross our fingers for next month knowing that each day can change very quickly. The clinic visit was the fastest yet since there was no breathng treament and no wait in the lab for his blood draw. His numbers were: WBC 5.3 ( 4-12) Hemoglobin 13.3 (11.5-14.5) Platelets 160 (150-450) The month of December is pretty crazy with Drew's B-day on the 20th and Jamie's 7th B-day on the 29th. We try to make each one special and not mix it with X-mas. We would like to thank everyone for your prayers over the last year and hope that you all have a safe and healthy Christmas. Happy New Year and take care!!!!! The Straka Family

Halloween

11/16/06 Update Teri, Jamie, Jesse and I went to Milwaukee for Jamie's monthly check. Since I had Friday off, we went up Thursday night so Jamie and Jesse could do a little swimming, which they love. Friday's check up went better than expected. Jamie's numbers were all very good: WBC: 4.3 Hemoglobin: 12.9 Platelets: 184 Dr. Margolis was satisfied enough with Jamie's counts that he gave us the go ahead to again stop the Cyclosporin. This will be our third attempt at stopping this medicine, so really hoping the old saying "third time's a charm" is accurate. Another nervous month. While in the hospital, Jamie and Jesse were able to spend some fun time with their friend Taylor, who happened to be there at the same time getting a Platelet transfusion. Please continue to join us in our ongoing thoughts and prayers for Taylor's recovery. In all other respects, Jamie (and the rest of us) are doing great. Jamie is still getting caught up in school but is making steady progress. Jesse continues to make every day a wonderful new adventure, and Drew keeps us smiling. Everyone is looking forward to the holidays and spending time with family and friends. As always, thank you for your continued thoughts, prayers and support. 10/11/06 Update Jamie and I went to our monthly clinic visit on Tuesday. His blood counts were all in the normal range including his liver enzymes as well. He still has the small rash under his arms so we will continue to put the ointment on and wait another month and hope it goes away. Jamie did his breathing treatment and also got a flu shot which was a surprise to him. I explained that the rest of the family will also be getting one too. Jesse won't be liking that!!!! Lynette (nurse practitioner) said we will try to wean the anti-rejection meds in a couple of months. The waiting game continues but Jamie is doing what every little boy would be doing at this age so we are very happy. We would like to ask everyone to say a prayer for our friend Deven and Taylor who are also fighting this nasty disease. Thanks and have a good day!!!! 9/13/2006 Update Hello everyone!! Jamie and I headed to Milwaukee on Tuesday for his monthly check-up hoping for some good counts since he had been off the anti-rejection meds for a month. Well, we got the normal blood counts but he had elavated numbers with the AST and ALT. This measures how his liver is reacting to aplastic anemia and the meds he was on. Lynette (our nurse practioner) also found a small rash under both of Jamie's underarms. She went on to say that Jamie has a mild case of graf vs host and we need to treat that by putting him back on the anti-rejetion med and using cream to clear up the rash. Graf vs Host is a type of incompatibility reaction of transplanted cells against host tissues that poses an antigen not possessed by the donor. Dr Margolis wants labs in two weeks to check his liver function and then back to Milwaukee in a month. They are not worried about this setback but are being cautious and would like this to clear up before trying again to take away the cycosporin. His blood counts were: WBC 3.9 (normal range 4-12) Hemoglobin 13.0 (normal range 11.5-14.5) platelets 173 (normal range 150-450) Jamie is doing great otherwise. He is loving school and riding his bike everywhere. We would like to wish Uncle Brad a Happy B-day on Sept. 7th. Thanks for checking in!!!!!!! Teri 8/28/06 Update Sorry for the late update. It has been a very busy couple of weeks. Jamie had a very good checkup. We were concerned as he had a bad cold and upset stomach, but his numbers came back very good and Dr. Margolis gave the O.K. to stop his cyclosporine ( which suppresses his immune system). This was great news but also somewhat concerning as we stopped this medicine one time before and his counts dropped drastically. This will be another anxious month as we wait to see what effect it has this time. On a lighter note, when we went up for Jamie's check up, we took Jesse and spent a couple of days at a hotel with a water park and went to a Brewers game. The boys had a lot of fun and it was a nice "mini vacation".

6-16-06 Update Jamie and I (Teri) went to Milwaukee Thursday for his monthly visit along with some one year tests they wanted to do. We were very busy in the morning going from appointment to appointment but Jamie came through with flying colors. His labs were also very good: WBC 3.3 (a little low) ( 4-12) RBC 12.8 (11.5-14.5) Platelets 213 (150-450) Dr. Margolis also gave us the go ahead to start reducing the meds again so we are keeping our fingers crossed as we move forward. I was actually surprised to see his counts go up due to the fact he has been fighting a cold for two weeks. We will go back to Milwaukee in another month for the clinic visit to see how Jamie is doing with his reduced dose. In the meantime Jamie is playing teeball, swimming everyday and riding his bike everywhere. He really is making up for the time he lost last year in the summer. Go Jamie!!!!!!!!!!!!!

6/7/2006 - 1 year since surgery What a difference a year makes. We are very happy to have that year over with!

5/30/06 We finally got the DNA test results back and they were good. 85% Jesse 15% Jamie. We will now start reducing Jamie's medications according to Dr.'s orders. We are also coming up on Jamie's one year transplant anniversary (6/7/05). That means his next check up will involve a battery of tests, including an echocardiogram, bone density test, psychological exam, along with his usual breathing treatment and blood tests. So far, Jamie is having a great summer and we are very thankful. We are hoping the one year tests will come back with good results and we can put this terrible disease behind us. Thank you for all thoughts this past year.

5/19/06 Update I took Jamie up to Milwaukee for his monthly breathing treatment and clinic visit on Thursday. They did not have many rooms available so we ended up sharing a treament room with our new freinds Taylor and Teri from Gurnee, IL. Taylor also had Aplastic Anemia and had a sibling transplant two months behind us. Teri and I have gotten to be good friends through this last year. Jamie's counts: WBC 3.1 Hemoglobin 11.4 Platelets 172 They did the DNA test but the results will not be in until sometime next week. His blood counts are still in the normal range and they will wait until the test comes back to make any decisions on the medications. Meanwhile, Jamie is finishing up Kindergarten next week and looking froward to the summer. We will update sometime next week!! Take Care, Teri

5/19/06 Update

Another anniversary has arrived. Friday the 13th, 2005, we were in Iowa City for another bone marrow aspiration. We received the results later that day and Jamie was formally diagnosed with Severe Aplastic Anemia. It is hard to describe the feeling of being sick and terrified at the same time. It marked the beginning of a long and emotional summer. These anniversaries continue to remind us of just how far Jamie has come and how blessed we are. Jamie is still doing great. Going to school regularly, riding his bike, playing with Drew and fighting with Jesse. However, this will be an important week for us. Jamie goes back go Milwaukee this Thursday he will have another DNA test done. Depending on the results, Dr. Margolis will decide whether to start taking Jamie off his last medications. It is down to this last final hurdle. We need Jesse's DNA to have taken over and we need Jamie's counts to stay up if the medications are reduced. For all of you who have been so generous with the prayers, we are sending out another request! This is going to be another important time for Jamie. Thanks for your support. 4/24/06 Update Jamie had a routine check up on Thursday, April 20, along with another breathing treatment. Everything went well and his numbers were good: WBC: 3.9 Hemoglobin: 12.9 Platelets: 182 Dr. Margolis will do another DNA test next check up and then decide whether or not to start reducing Jamie's last meds. In other news, we took the training wheels off both Jamie and Jesse's bikes and they are riding great. A few minor crashes and frustrated meltdowns, but they are now both riding all over the yard and very proud of their accomplishments. 3/27/06 Update Teri took Jamie and Jesse to Milwaukee on Friday for Jamie's clinic and breathing treatment.  He did very well with the breathing treatment and his numbers came back good:   WBC:                  4.7   Hemoglobin:        11.8   Platelets:            149   Jamie has been battling a cold (along with the rest of us) which explains his platelet drop.  This was expected and is still in a good range.  Jamie likes to have Jesse go along with him when he can, and they seem to do pretty well together, even in the van.   Dr. Margolis wants to get through the cold and flu season before reducing Jamie's meds, which makes sense to us.  Also, Jamie has been cleared to go to clinic once per month rather than every other week, which is also great news.  The pictures show Jamie and Jesse playing around during Jamie's clinic and Jamie enjoying his "Shamrock Shake" from Uncle Brad. (Uncle Brad's shake was more of the Guinness variety.)

3/18/06 A Wish is Granted Jamie's Make-a-Wish trip was a great success.  As reported earlier, Jamie's wish was to meet the Power Rangers (especially the Red one who is his favorite).  I was a little skeptical about how he would react seeing them in person as I thought he would get scared and not want to meet them.  However, as the picture shows, Jamie did great and posed with the Power Rangers for several pictures (Jesse, on the other hand, hid in the bushes).   We had a great time and packed a lot of activities into seven days.  Animal Kingdom, MGM Studios, Magical Kingdom, Sea World and lots of swimming and ice cream.  We had great weather and everyone stayed healthy the entire trip.  We stayed at "Give the Kids the World Village" where all the Make-a-Wish kids stay and it was wonderful.  On the first day the boys got to spend time with Grandma Karen and Grandpa Larry doing all their favorite things, including fishing and then eating ice cream.   If Jamie had his way, he would have never left the village.  He would have spent seven days swimming, eating ice cream, fishing and playing miniature golf.  Once we got him to the other attractions though, he had a good time.  The trip was also the perfect length of time as Jamie and Jesse began to express their desire to see brother Drew and Sydney (our dog) on the day before we left.     Everyone is now home safely and we are counting our blessings.  Not only did we have a great time and safe travels, but staying at the village with other children facing life long challenges reminded us of how lucky we are that Jamie is doing so well.  He was supposed to go to clinic on Friday for another check up and breathing treatment, but because of a winter storm passing through, we rescheduled to next Friday.  Given Jamie's great energy level, appetite and health, we are hoping for some great numbers and the go ahead from Dr. Margolis to again start reducing his meds.  If we could just get over this last hurdle...

3/4/06 Update Teri took Jamie to clinic today.  Aside from running into some heavy snow in Wisconsin and a heavy backlog at the hospital, things went well.  Teri and Jamie home safe with some great numbers:   WBC                                  5.0 Hemogobin                        12.7 and Platelets a whopping     239   Dr. Margolis was happy with these numbers but did comment that Jamie's body sure likes the cyclosporin.  Not sure how to take that yet.  If we could just get Jamie to maintain these types of numbers without the meds, we would be in great shape.  Dr. did decide to wait until next clinic to think about reducing his meds again, which is fine with us since next week is our big trip.   Make-a-Wish foundation approved Jamie's wish to go to Disney World and meet the Power Rangers and we leave next Thursday!  Grandma Judy and Aunt Leah will be watching Drew for us, as he is just too young for this trip (13 months).  Jamie and Jesse have been pulling out their little suitcases for the last couple of weeks asking if it was time to pack yet and now we are getting really close.   Two Make-a-Wish volunteers came out last night to drop off presents for the boys and give us our plane tickets and itineraries.  Teri and I are about as excited as the boys.  Last year our "vacations" consisted of stays and hospitals.  This year, no hospitals or needles on this trip!  We are very ready to just let the boys (and us) have some great fun for a couple of days.  2/20/06 Update Jamie, Jesse and I (Mom) went to Milwaukee on Friday instead of our usual Thursday because Dubuque received 6 inches of snow on that day.  Jamie enjoyed Jesse's company on our 3 hour ride up to the clinic watching DVD's and coloring.  We then went out to lunch on the way home which they really enjoyed. The visit went well with Jamie's numbers still doing fine.  WBC  3.7      Hemoglobin  12.7     Platelets  177.  Lynnete (nurse practioner) was happy with his counts and Jamie did very well with his monthly breathing treatment.  Dr. Margolis is going to wait a little longer to decrease the anti-rejection medicine so we will continue to go every other Thursday. We hope all is well with everyone and pray for our friends that are also dealing with the ups and downs of Aplastic Anemia.   2/14/06 Update Jamie did not have to go to clinic this week, so nothing to report numbers wise.  He continues to feel and act great.  Going to school, swim lessons and basketball practice; and for that we continue to count our blessings, especially on this day.  It was one year ago today that the AA bomb was dropped on our family.  A date, as the historic quote goes, "which will live in infamy" for our family.  Although not formally diagnosed for a couple of months, this was the start of our battle.  God Bless and thank everyone for all your prayers and support this last year.

Saint Valentine's Day - A year in Retrospect Valentine's Day, 2005, we had some friends and their children over for a pizza party. After playing normally for a little while, Jamie laid down on the couch and said he did not feel good. We wanted to get a picture of all the kids, but as the attached photo shows, it was all Jamie could do just to lift his little head up. He was extremely lethargic and when the others kids began to play his favorite Power Rangers, he walked into his room and shut the door. We knew then he was sick. However, when Teri picked him up from daycare that afternoon, there was a sign posted that a certain strain of the flu had hit. We assumed he caught the bug and Teri made plans to take him in the next day to the doctor. No panic. The usual battery of tests were run to confirm the flu, unfortunately, they all came back negative. Our wonderful and experienced pediatrician noticed "petechial hemorrhages" (which look like little red dots) on Jamie's chest and under his arms. We had noticed them before, but just thought it was some type of rash from dry skin or wrong bath soap. He ordered blood tests done and then sent Teri and Jamie home, as it would take awhile to get the test results back. Still no panic, just figured the doctor was trying to determine what strain of flu Jamie had. Thinking we would not hear anything for the next day or two, I attended a meeting with the fire department. I arrived back home after everyone else had gone to bed and there was a note on the counter. "Dr. Franzen called--Jamie's blood counts are way down--need to take him to hospital right away in morning" Now panic. First of all, I had never before heard of a doctor personally calling someone at home in the evening to come back to the hospital in the morning. Second, I had learned just enough in my EMT class to know that fluctuations in the blood count were not good. Thus started my first of many restless nights -- little did I know how many. Also, to this day, when I walk in the door at night and see a note on the counter, my heart skips a beat, regardless of how well things are going. We took Jamie in the next morning and he was admitted. Over the next couple of days Jamie received blood transfusions and medications. The transfusions were a temporary fix, but the medications did nothing. Our doctor had been in contact with Iowa City during this time and the decision was made to transport Jamie to Iowa City for further testing. How Jamie was to get there was of no discussion or debate. Our close friend, neighbor and fellow firefighter/EMT Dean, had contacted our fire Chief, Jack about the situation. Jack indicated that if Jamie needed to be transported to Iowa City, they were going to do it. So in about an hour, the Centralia/Peosta ambulance, along with lead paramedic Roger, EMTs Jack, Dean, Ron and Mary arrived at Mercy hospital. Words cannot describe the sense of security that was felt by Teri and I knowing these talented and dedicated individuals would be watching over Jamie during our trip to Iowa City. The trip itself was relatively uneventful, thankfully. However, once we arrived at Iowa City, things changed drastically. We did not even make it through the check in process and Jamie began exhibiting severe hematemesis (vomiting blood). Nothing will cause more terror than watching a specialty hospital scramble to treat your child. Nothing will bring more solace than watching a specialty hospital stabilize your child so that you can once again hold him in your arms as you took for granted so many times in the past. After that night, Jamie received two bone marrow aspirations; platelet transfusions weekly; and red cell transfusion about every eight to ten days until being formally diagnosed with Severe Aplastic Anemia on May 13th, 2005. And the rest, as the cliché goes, is history. Jamie’s website begins after genetic testing confirmed that both his younger brothers were suitable matches for a bone marrow transplant. To follow the site from the "2005 Updates" to today shows just how far we have come. God Bless!

2/3/06 Update I (Tom) took Jamie to clinic this week.  Jamie did great and did not cry at all when his blood was drawn, although I still had to cover his eyes, which is our routine.  I was a little nervous given Jamie's drop last week, but fortunately his numbers came back up again.  WBC  3.6 Hemoglobin 13.3 Platelets 191 Our nurse practitioner Lynette was very excited (as was I).  Not sure if the drop was related to the reduction of his meds or if he caught some type of bug (although he never acted sick).  In any event, Dr. Margolis has decided to keep his meds at .5 (up from .2) for another month or so and then we will try again to ween him off.  In more good news, Jamie's counts were high enough that Dr. will let us go back to the every other week check up.  The bad news is that next clinic is another breathing treatment. The pictures are what Jamie took himself around the house of all his favorite things! A budding photographer! 1/28/06 "Not Worried" Update Teri took Jamie to clinic on Thursday.  Jamie has been feeling great, eating great, and attending school regularly.  We were very hopeful his good numbers trend would continue and we could move towards taking him off all meds.  Unfortunately, there was a glitch.  His Hemoglobin held steady at 12.2, but his WBC and Platelets dropped significantly (2.6 and 137, down from 4.5 and 206).  Dr. Margolis was somewhat perplexed at this and ordered another round of DNA tests (which meant another round of needles for Jamie) to be done ASAP.  It usually takes about a week or two to get DNA test results back, but Dr. ordered them "Stat" so that he would have the results today (Friday).   Teri received a call from Lynette, our nurse practitioner, about 3:15 today who advised the DNA had also slipped to 80% Jesse 20% Jamie.  Lynette did say though, that the first words out of Dr. Margolis were that he "was not worried" about this.  We have all the faith in the world in Dr. Margolis and find some solace in his words, but one can't help but get a little anxious.  To be safe, Dr. did order that we increase Jamie's meds back up to .5 from .2 and Jamie will again need to be seen every week (at least we got to skip one week!) instead of every other week.   Not sure what is going on, but not letting the anxiety level get too high right now as Dr. Margolis has been very upfront with us throughout the entire process.  He is very good about telling us which things we should be worried about and which things we shouldn't.  Right now, he is not worried so we try not to be.

1/12/06 Update

Teri took Jamie to Milwaukee today for his weekly check up and things went well, other than a few delays.  Jamie did have to another breathing treatment today (seems like he just did one but it has been a month) and Teri said he did very well.  He got the entire treatment done without getting sick, which is great.  As far as his numbers go, they were also very good:   WBC:                    3.5 Hemoglobin  12.7 Platelets:               206   Because of his good numbers, we are again reducing his cyclosporin down to .2 ml and Jamie can now get checked every other week--Yea!!  Once his cyclosporin is stopped altogether, another round of DNA tests will be done to make sure Jesse's cells are still "running the show."   The weather was very nice here today (for January in Iowa) and Jamie and Jesse were able to get their 4 wheelers out and ride around for a while.  Friday night we are taking Jamie and Jesse to a bull riding rodeo here in Dubuque and they are very excited.  They have been wearing their cowboy boots around the house in preparation for a couple of days now.  Should be a great time.  Hope everyone's New Year is starting off as well as ours.

1/13/06 Rodeo Fun!

Nothing new to report, but we took Jamie and Jesse to a bull ride in Dubuque and they loved it.  We had great seats three rows away from the center of the ring and some of the bulls got really close.  Everytime one of the bulls would chase a bullrider around the ring Jamie would scream "Dad! That was so awsome!"  We had a really good time and enjoying every minute of good health. 1/3/2006 Update Jamie and I went to Milwaukee on Tuesday for his weekly check-up.  His counts came back good considering we had gone down on the medication a week ago.  They are all in the low normal range and his kidney function is looking good.  Lynette (our nurse practioner) was checking him over and discovered he has an ear infection in his right ear.  Jamie will take Zithromax for five days to clear that up. ( not a big deal)   Wbc              4.7  Hemoglobin  12.6 Platelets       181   Dr. Margolis has also decided to continue to lower Jamie's anti-rejection medicine again.  We were giving Jamie 1/2 ml (.5)  two weeks ago and now we are at .3.  I will take Jamie back next Thursday for his next apponintment and breathing treatment.  We pray that the numbers are higher or stay the same. We hope everyone had a safe Holiday and a very Happy New Year.  Thanks for all your prayers!