tag:blogger.com,1999:blog-321023682024-03-13T14:42:48.079-07:00The Long Family's BlogJosh Longhttp://www.blogger.com/profile/03511083686180216122noreply@blogger.comBlogger180125tag:blogger.com,1999:blog-32102368.post-34909068556091626622013-06-20T12:28:00.000-07:002013-06-20T12:28:53.316-07:00Summer FunI haven't updated since Jacob's year mark. We have been very busy playing hard. We have several years of catching up on living life free of isolation and we are enjoying every minute of it. It is such a blessing each day to wake up with my family under one roof, to watch my boys playing, and yes, even to break up their sibling quarrels. We have been able to enjoy Disneyland and even splurged on annual passports. We have celebrated birthdays, our anniversary, Father's Day, and more all without the fear of germs (at least not to the same degree as we used to). <br />
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Now onto Jacob's health update: All of Jacob's lab work from May looked fantastic! His igg level is now in the solid normal range, meaning that his immune function is normal for the first time in his life. He has received many of his immunizations, although he has to wait a full two years post transplant to receive MMR because it is a live virus. We also have to continue to use plenty of sunscreen because of his increased risk of skin cancer. He continues with speech and occupational therapy, and when he starts kindergarten in August he will be getting pretty much every therapy the school district offers, as well as resource support in the classroom. Those are small things compared to the the huge trials he has overcome. We can live with those things. He is truly an incredible child. With everything he's been through, he is so happy and loves people. We are so blessed to have him in our family and now to have him cured of CGD is such a miracle! It's strange to think of someone else's bone marrow functioning in his body, keeping him healthy, and I am eternally grateful for the generosity of his donor. We have not been able to meet her, but maybe for whatever reason, she wanted to stay anonymous, and we respect that. We still love her and won't be able to thank her enough in our lifetimes. I just hope that someday we will be able to pay it forward by having someone in our family be the match for someone else needing a transplant. <br />
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Now onto the photos!<br />
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Matching outfits :)</div>
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The boys love being at the same school.</div>
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The best Mother's Day a mom could ask for.</div>
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Ethan earned the highest reading score in the whole 1st grade!</div>
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Father and Sons Campout with Grandpa (Jacob's First!)</div>
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Preschool Graduation</div>
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Teenage Mutant Ninja Turtles Craze</div>
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Jacob's First Time Bowling</div>
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Playing at the Park</div>
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Cosmic Miniature Golf</div>
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Disney, Disney, Disney!</div>
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Make-a-Wish Night at the Zoo</div>
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Celebrating our 9th Anniversary in Big Bear</div>
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One of our many visits to the library</div>
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Jacob's 5th Birthday Swim Party!</div>
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Ethan earned the Belt of the Week at karate!</div>
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My mom & me at the shooting range</div>
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Our nephew Colin's 2nd Birthday Party</div>
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A happy Father's Day, me with my dad</div>
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The boys and me out boating with my parents</div>
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That pretty much gets us caught up! Wishing you all a happy, safe summer!</div>
Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com3tag:blogger.com,1999:blog-32102368.post-29749071438389268232013-04-06T19:34:00.003-07:002013-04-07T00:47:42.081-07:00A New BeginningToday is the one year anniversary of Jacob's second bone marrow transplant. It's incredible to see how far he has come. <br />
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Here he is 12 months ago receiving those life saving cells. He had just finished five days of intense chemotherapies. He was on many heavy drugs and this was a very difficult time for us. <br />
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Since I last posted Jacob has been able to experience numerous firsts now that a year has passed for his immune system to recover and mature. </div>
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Jacob was so excited to be able to go to church with our family! It's been almost 2 1/2 years since he's been able to go. Finally! We kept him restricted from public places ever since we started preparing for his first transplant, over two years ago. It would've complicated the transplant if he had an active infection since the immune system gets wiped out in the process. He loves church. </div>
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Jacob planted a garden with Grandma Judy and Ethan! Don't you just love his sunhat? (He is at a higher than normal risk for skin cancer, so he must be careful in the sun.) Since Jacob was diagnosed with CGD at 15 months old, we have kept him away from wood chips, hay, and soil. It's been fun for him to discover these normal kid things even though he is almost 5 years old now. </div>
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On Monday, Jacob started preschool! Here he is with his amazing teacher on his first day of school.</div>
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Also, Jacob was able to celebrate Easter OUT of the hospital for the first time in 3 years! The last two years, he's watched Ethan dye eggs on Skype, but this year, he actually got to dye them himself!</div>
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In celebration of Jacob's one year mark post transplant, we held a family party today. Many of Jacob's amazing support team were able to attend. Thank you to everyone who came and to those who celebrated with us in spirit and made this day extra special for Jacob and our whole family!</div>
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I am looking forward to sharing more of the world with Jacob. Things I have in mind that are local are Disneyland, the beach, the zoo and museums. Jacob's cure was truly a miracle. I'm so grateful for this new beginning!</div>
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Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com5tag:blogger.com,1999:blog-32102368.post-75765200213111610842013-03-13T16:20:00.001-07:002013-03-13T16:20:24.648-07:00Day +340It's hard to believe another 20 days has passed again. The next time I post will probably be for Jacob's one-year transplant anniversary! Ethan started soccer a few weeks ago and we have been busy, busy, busy keeping up with his activities. It is fun to see him try out the sports he has been waiting for while Jacob has been in isolation the past two years. <br />
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We saw Jacob's doctor on Monday and everything is looking great! Just about all of his counts are within normal range now and we pretty much got the ok to let him resume normal life. We are still waiting for the results of the test that shows if his body made antibodies to the tetanus shot that he got in January. He got two more shots on Monday, Hep B and Hib. It's a scary feeling to just trust that his body will know what to do when he gets sick, but that's a leap of faith we're going to have to take at some point. I'd at least like to wait about one more month for flu and rsv season to pass. I'm pretty sure that our family will never be able to look at germs in a normal way again. We always have hand sanitizer handy and we tend to keep our distance from people who are visibly sick. The kids always wash their hands when getting home and before eating. These are all good hygiene practices anyway, but I'm sure we are more strict about them than the average family after everything we've been through. <br />
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We are also back on board for going to Seattle for an annual checkup. I'm not sure I'll be able to convince the doctor every year, but I was at least able to persuade him this one time. We plan taking the whole family and making it a fun trip (whenever we're not at appointments or in procedures) now that Jacob is no longer limited to staying away from crowded places. We will try to get this trip scheduled for June so Ethan will be out of school. <br />
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Jacob's speech therapy is going well. He has been going for five weeks and I am already starting to notice an improvement. The clinic we have been taking him to is contracted with Kaiser, so we have to pay a co-pay for each session. He has an evaluation with the school district tomorrow to see if he qualifies for <i>free</i> speech therapy with the district. <br />
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After a thorough evaluation on Monday, the Kaiser child development doctor recommended that Jacob start out school in a small class so that his immune system isn't bombarded with so many germs at once. He also said a small class would be good because of his speech impairment. Hopefully the school district can offer him something that will fit his needs. His evaluation also showed that Jacob does not have any learning or developmental delays other than his speech. That was a relief to hear. It feels good to be making strides in the right direction to help Jacob catch up with the normal life he has been missing. Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com1tag:blogger.com,1999:blog-32102368.post-26419963701359922382013-02-21T13:50:00.000-08:002013-02-22T16:04:39.563-08:00Day +320<div class="separator" style="clear: both; text-align: center;">
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The good news with this update is that there is no news. Just how I like it. heheh... But seriously, it's just been a lot of day to day normal stuff, which is really such a blessing.<br />
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Here are the highlights:<br />
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Jacob had his make-a-wish interview and wished to meet spider-man. He also wished to <i>be</i> spider-man so he can climb buildings and catch the bad guys. It will be several months before his wish is pulled together and presented, but I am SO excited for him! Jacob also started his weekly speech therapy. Overall he enjoys it because they have a lot of toys and games to practice his speaking. He is also getting physical therapy to help strengthen his leg muscles and coordination. Next month he will meet with the school psychologist. I'm interested in finding out what services he will qualify for. I'd like to keep him home next year, but it'd be nice if he can receive supportive services from the district to help him get ready for school the following year. Jacob also had his first dental cleaning since his transplant. His dentist told him he needed to stop sucking his thumb or else he'd need braces by the time he was 7. Jacob really took this to heart and stopped sucking his thumb all on his own. Cold turkey. I offered to put yucky stuff on it, or even just a bandaid to help him remember, but he didn't want any of that stuff. He just stopped. I'm happy about it because now I don't feel like he's putting so many germs in his mouth before I have the chance to wash his hands. However, part of me is a little sad too, because he <i>is </i>my baby and looked so darn cute sucking his thumb. I am really proud of his willpower though. Amazing child!<br />
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Ethan with his teacher, Mrs. O</div>
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Ethan with Grandma Judy</div>
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Now onto Ethan's big news: Ethan was awarded Champion of the Week a couple of weeks ago! Also, his artwork was chosen to represent his entire school at the district Festival of Arts coming up next month! He continues with his karate lessons and has his first belt test coming up next month. He is excited! He is also starting his very first season of AYSO soccer. We meet his coach on Saturday.Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com1tag:blogger.com,1999:blog-32102368.post-20428285252107304792013-02-01T10:27:00.000-08:002013-02-01T10:32:01.242-08:00Day +300!!<div class="separator" style="clear: both; text-align: center;">
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I can't believe 300 hundred days have passed since Jacob's transplant. I feel very blessed that he has come so far and that he is cured of CGD. </div>
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Jacob had an appointment on Monday. All of his numbers looked good and he even gained 2 lbs! He also got his first two re-immunizations: polio and pneumonia. In 6 weeks we will follow up with those to see if his body is making antibodies against those diseases, then we'll know if the immunizations are effective in his body. He is off all medications and just takes multivitamins and calcium. We also got the green light for him to visit the dentist as long as he takes a precautionary dose of antibiotics 1 hour before his appointment. </div>
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Jacob also had a speech evaluation last week and qualified for weekly speech therapy. He will begin with those sessions in the next couple of weeks. I am also working with the school psychologist to find out what they can offer him in the way of beginning school in the fall. It sounds like we have a lot of options. </div>
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We are looking forward to Jacob's make-a-wish interview coming up later this month. He says his wish is to build sand castles on the beach. He can't remember ever going there since we haven't taken him since before his first transplant over two years ago. We will see if he sticks with that wish or his imagination takes him somewhere else while visiting with the wish fairies. :) </div>
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I'm not sure if an annual visit to Seattle is going to happen. SCCA primarily wants to investigate any chronic GVHD issues, and since Jacob doesn't have any signs of GVHD (thankfully), our doctor says he'd have a hard time justifying the authorization for Kaiser to foot the bill. Any other annual work ups SCCA wants can be done locally and sent up. I have to admit I'm a little disappointed. It would've felt somewhat victorious taking Jacob back to see all of our old doctors and nurses and show them how far he's come. The last time they saw him he was bald, swollen with steroids, and had an ng tube taped across his face and a central catheter coming out of his chest. Now here he is off all medications with a head full of hair and completely tube-free. I can't help but feel proud of everything my little warrior has overcome, and I'd love to show him off to our team up there. They should be proud too, with the care they provided him and the fact that they successfully cured him! (Something the BMT doctors at CHLA were unable to do.)</div>
Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com1tag:blogger.com,1999:blog-32102368.post-23548011107173744832013-01-12T12:19:00.000-08:002013-01-12T12:19:08.271-08:00Day +280<div>
I hope everybody had a wonderful holiday season! We enjoyed spending time with our extended families, including those who traveled great distances to be together during the holidays.</div>
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Jacob is doing better since the last time I posted. His tummy finally settled down thanks to a regimen of Activia and Culturelle. The probiotics seemed to balance his tummy back to normal. Other good news is that Jacob's appetite has improved significantly. I'm hoping we will finally see weight gain at his next appointment, instead of a loss, like he had at his last two appointments. <br />
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Jacob saw a dermatologist last month to address his skin issues. His skin has been flakey and rashy. He is using several creams and lotions and we've seen some improvement in that area. <br />
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Josh and I enjoyed a trip to Las Vegas to attend CES this past week. The boys stayed with Josh's parents and did great! I was concerned leaving Jacob, but he did fine away from me.<br />
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One of the current issues I'm dealing with now is trying to figure out what type of schooling would be best for Jacob. I can't believe he will turn 5 this year! I'm pretty certain that attending a traditional kindergarten class would not be a good fit for him. He hardly has any experience interacting with other kids besides Ethan and his little cousin. Not to mention, that he is about the size of a 3 year old. It would be more than I could bear to have him get picked on at school because of his size. Like he hasn't been through enough already. He is also difficult to understand. He has a hard time forming his letter sounds correctly, and I'm pretty certain it's because of the 3 1/2 months that he was inpatient at CHLA in 2011 when everyone had to mask up in his room. That was such a crucial developmental age for him and he couldn't even see our mouths. He begins speech therapy this month through Kaiser, and we are in process of getting him into the school system's speech therapy program as well. Hopefully we will see quick improvement there so he won't get frustrated trying to communicate with his teachers and classmates when he does start school. I'm also worried that a combination of being stuck in the hospital so much of his life and the side effects of the chemotherapy may have caused some memory problems. We work really hard at learning his numbers and letters, but he has a really hard time retaining any of that information. So I'm trying to figure out my options and where Jacob would feel the most comfortable when the next school season rolls around. <br />
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I'm also deciding if we should take him back Seattle for his annual testing. Traveling takes a lot of coordination and I'm pretty sure that all the testing they want done can be done locally with Kaiser. Then Kaiser can just send them the results. Anyway, I still have some time to decide. His year mark isn't until April 6th, so I'll have to think on it some more. <br />
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Here are some of my favorite shots from vacation:<br />
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Boating Fun</div>
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Cousin Love</div>
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Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com1tag:blogger.com,1999:blog-32102368.post-61230257509304634572012-12-24T11:21:00.000-08:002012-12-24T11:21:30.539-08:00Day +261It's been a month of ups and downs. We had to say goodbye to Josh's grandmother who passed away at the end of November. We will miss her very much, but we find comfort in our knowledge of the plan and purpose of life. <br />
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Ethan performed some musical numbers with the children's group at our church's annual Nativity Festival. We were joined by his aunt, uncle, and grandpa. It was such a great reminder of the reason for the season. Here is a picture of Ethan after his performance.<br />
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Two weeks ago, Jacob came down with a stomach virus, which then got passed to the rest of the family. I had to keep a close eye on him to make sure he wasn't getting dehydrated. He pulled through without hospitalization and seemed to be better, but then last week he started getting bloated and having diarrhea again. One night he woke up crying with stomach pain so I took him to the ER. They examined his tummy, ordered some stool cultures, and sent us home. Every test and xray has come back negative for the types of infections they screen, including pneumatosis and c.diff, both of which he has a history. His blood work actually looked great. Almost everything was in the normal range, and those that were outside of normal, were only by a point or two. So, we're not really sure what is going on with his tummy. Hopefully it resolves on its own, or else he could end up having to get yet another endoscopy with biopsy, and could end up on steroids again to settle things down. </div>
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One of the fun things from this month was I was able to help out at Ethan's gingerbread decorating party at school!</div>
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Here are my two little Santa's helpers!</div>
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On Saturday, we enjoyed our first family Christmas gathering. Jacob got a little overwhelmed at first. He's not used to being around any large number of people. So I took him home to relax for a little while, and when we went back, he adjusted just fine. </div>
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<br />Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com3tag:blogger.com,1999:blog-32102368.post-84921551507588100982012-12-03T15:36:00.000-08:002012-12-03T15:36:37.565-08:00Thanksgiving (Day 240)There truly is so much for our family to be thankful for. We have been able to enjoy a period of good health for Jacob these past 3 months and hope that means that his immune system is kicking in like it should. I can't believe we got a 6 week break from seeing our doctor. I'm starting to find ways to fill my time. With stretched out breaks between visits, no central line, and only two medications to keep stocked, we are in a good place. <br />
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For Thanksgiving break, we actually ventured out to our family cabin in Northern Utah. We enjoyed time with family and nature. Jacob was so cute as we traveled. We had to keep explaining to him what a vacation was and that we weren't going home at the end of the day, but rather, at the end of the week! My little guy couldn't remember ever having gone on vacation. Of course we remained as vigilant as we could when it came to germs, and he stayed well throughout the trip. Ethan, on the other hand, began coughing yesterday morning. I'm sure it's something he picked up at school, which I'm afraid may have spread to Jacob. <br />
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We loved the snow!</div>
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On our drive home from Utah, we were able to stop at the St. George Temple visitor's center. Inside is a beautiful Christus statue that we were able to sit in front of and admire. The missionaries control an audio portion that has different scriptural quotes of Jesus' words. It started out, "Behold, I am Jesus Christ." At that moment, Jacob happily said, "Hi, I'm Jacob. And this is my brother Ethan." It was so touching. Jacob loves his Savior, and I know he has been very close to Him many times in his life.</div>
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St. George Temple Visitor's Center</div>
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Jacob's appointments today went mostly well. His blood work is showing signs of immune recovery, and all of his results were in range, except his AST (liver function test), which came back high. The fluid around his heart is completely gone! The only setback today was a fever of 101.0 during vitals. That really surprised me. He hadn't felt hot to me. By the time we got home his fever was gone but he needed a nap. Plus, he hasn't wanted to eat anything all day. Hopefully he wakes up from his nap hungry. The other hard part about today was that he had to get poked twice during labs. I think the technician might have been inexperienced. My poor little guy cried and kept saying "That's a big owie. Ok, that's enough" over and over. I had to try really hard not to get irritated with the tech. Next time I will ask to have his blood work done at the Rancho lab instead of the L.A. one. I was not impressed. I had even put numbing cream on. <br />
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So for now, I need to keep a close eye on him to make sure his symptoms don't worsen and that his fever clears in 3-4 days. I think after having such a nice and healthy break from the doctor, we were jinxed or something for going back in today... Not really, but I have to wonder... :P If his infection clears on its own, then we don't need to go back into L.A. for another 6-8 weeks. At that time, he will probably be ready to start his immunizations again. With blood work and immunizations, it's not going to be a pleasant visit. But I'm grateful that he is headed in the right direction. Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com1tag:blogger.com,1999:blog-32102368.post-18678935032609071102012-11-13T10:39:00.000-08:002012-11-13T10:39:43.950-08:00Day +220I'm just overcome with emotion lately as Jacob continues to take steps, large and small, toward healing. Thank you for your continued prayers. His adrenal gland function (cortisol level) came back in the low normal range, so he gets to stay off his hydrocortisone suspension, which, according to Jacob, is "the yuckiest medicine in the whole wide world!" So we are both very grateful that he does not have to take the yuckiest medicine in the whole wide world any more.<br />
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Probably the biggest news I have to share is that he had his central line surgically removed 8 days ago! Since he had to be sedated, it was one of those no food, no drink days and his surgery wasn't scheduled until around 2:45pm. It was an incredibly long and emotionally draining day. Although it is a small, outpatient surgery, any time he has to undergo starvation and sedation, I worry. One concern was that since his adrenal glands were still a little sluggish, I thought maybe his blood sugar would plummet without being able to eat for so long. And then of course, there are always the risks of going under sedation... and then I worry about infection in the wound afterwards. Unlike Seattle Children's, where they let me stay with him until he was asleep, Kaiser took him from my arms while he was still awake. I'm grateful that he wasn't crying out for me this time like he has in the past at Kaiser, but nonetheless, I still felt my heart being torn out as I had to pass him over to the nurse and she carried him through those large double doors that I couldn't follow him through. Then they escorted Josh and me to the waiting room where minutes felt like hours and I had to remind myself to breathe. I really hope this is the last time he has to be sedated. It's such an awful experience to have to put your baby through. When we got home that night, Jacob scarfed down 3 whole slices of cheese pizza and I was able to throw out four boxes of saline and heparin flush syringes... no more line care for me! Yay! The surgery was successful and Jacob got to take his first bath without having to wear press 'n seal over a big ol' dressing! He was a little nervous about getting his chest wet at first, but now, a few days later, he is a seasoned little "swimmer," lying flat on his back in the bath. The line removal has been a huge physical and emotional step toward accepting his cure. I remember last year when his first transplant had failed and his doctor wanted to remove the line, I told him no, and that I only wanted that line out when he was cured. We accomplished that miracle! He is cured and his line is out!<br />
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Here's what Jacob's central line site/dressing looked like. </div>
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Imagine a 2-4 year-old having to live with that thing for almost two years!</div>
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It was a constant concern for infection and/or being caught and yanked on, </div>
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not to mention the daily flushes & locks, and the weekly cap changes & dressing changes.</div>
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Bye, bye, central line! </div>
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Thanks for saving us 19 months of pokes and pricks!</div>
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You were a life-saver!</div>
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(Yes, we did keep it.)</div>
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Jacob just finished his last weekend of Bactrim, an antibiotic that prevents pcp pneumonia. He was at risk for this infection both as a CGD patient and as a BMT patient, so he has been on this medication since he was diagnosed at 15 months old. I can't believe we are finally done with it!! It is a pink medicine, so we used to tell Jacob it was called his "pinkies" medicine, to make it sound fun. But honestly, it is not a "fun" medication, and I'm so glad to be done with it. Not only is it hard on the kidneys and supposed to be taken with plenty of water (try explaining that to a 4 year old who doesn't like eating or drinking), but it is one of his medications that makes him photosensitive, which means he has to be careful in the sun to avoid skin cancer. We mostly just keep him indoors, or else play outside around dusk, when there is plenty of shade. When he does have to be in the sun for more than 10 minutes, he has to wear sunscreen. He still takes one other photosensitivity causing drug, not to mention the transplant itself makes him photosensitive, but coming off Bactrim is still progress! <br />
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My last update on Jacob is a little more technical for my BMT-seasoned friends. His last iGg trough level at the beginning of November was 430, so we are still getting monthly infusions. He needs to be above 600 before we can stop getting ivig infusions. His immune system is slowly recovering, but the doctor already committed him to another infusion in December, especially it being cold and flu season. These infusions take about 4 hours from start to finish, and the biggest bummer about it, is that now without his central line, he will have to get a peripheral i.v. Not to mention, he will be getting poked for every blood draw now. Thankfully, though, he is going 6 weeks between doctor's visits. :)<br />
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Having so much time off from doctor's visits has allowed me to shift gears a little around here. I'm finding I have a lot of extra time that I have to figure out what to do with. A couple of things we started are karate lessons and art lessons for Ethan. I finally have the time to commit to taking him to activities. It's fun feeling like a "normal" family. :)<br />
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Ethan showing off his karate moves</div>
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Ethan's first art piece</div>
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Also, Ethan had a speaking part in his Veteran's Day assembly at school! It was so fun to be able to attend with all four of his grandparents and his auntie, uncle, and cousin! Grandpa Taylor is sitting on the stage as a veteran. We are so proud of our veterans! Thank you so much for your service and sacrifice for our country!</div>
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Thank you for your continued prayers for Jacob's healing and for our family. We are so grateful for each and everyone of you who has helped us through prayers, kind and charitable deeds, encouraging words, and countless acts of service. We are truly blessed and we feel of your love.Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com2tag:blogger.com,1999:blog-32102368.post-58609680439838841162012-10-29T10:13:00.000-07:002012-10-29T10:13:25.721-07:00Day +205<div class="separator" style="clear: both; text-align: left;">
It has been over 200 hundred days since Jacob's 2nd bone marrow transplant. I look at him and am amazed by the many miracles we have seen throughout his journey. I am so grateful and feel so blessed to have this precious little boy in my life. His checkup last week had all positive news. The fluid around his heart is finally starting to shrink. We don't have to see the cardiologist again until December, just to make sure it clears completely. Jacob was able to stop his blood pressure medication, like I was also hoping. He also stopped his potassium supplement. We have a consultation this week with the surgeon who placed Jacob's central line almost 19 months ago to discuss removing it. We also will try coming off his hydrocortisone this week to see if his adrenal glands will start functioning again. We should know by the end of the week whether or not he has any adrenal functionality yet. Please pray that he will! We are asking for this next miracle in progressing toward a complete recovery. </div>
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Riding bikes!</div>
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Playing at Grandma and Grandpa's house</div>
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Best Friends</div>
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Happy Halloween, from the Mario Bros!</div>
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Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com2tag:blogger.com,1999:blog-32102368.post-19073840177086376782012-10-18T10:25:00.000-07:002012-10-18T10:25:00.390-07:00Day 194At Jacob's most recent appointment two Mondays ago, his heart looked exactly the same. I went in hopeful since his fevers had stopped and his cold symptoms seemed to be gone, but his heart hadn't cleared out the fluid yet. He has an appointment this coming Monday and he will have another echo. We are enjoying two whole weeks off from doctors appointments! I call this progress! :) With his appointments spaced out like this, once his heart heals, we can have his central line removed. It is coming soon. I can feel it. That will be another huge milestone. <br />
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Here is all the big news since my last post:<br />
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I removed Jacob's ng tube! A lot of you already know this from my Facebook pictures, but just thought I'd make the news official on our blog. It made me nervous losing access to his tummy, but it had to be done at some point and his doctor kept asking me about it at each appointment, so out it came! I'm so proud of Jacob. The first few days of oral medicines were very difficult for him, but we persevered. At first it took about an hour for him to muster up the courage to take his 4 weekday meds. (He takes 5 on the weekends.) He earned a coin for every medicine that he took, and was also rewarded with a new blue Power Ranger and blue Ninja Turtle. Now we are done in less than five minutes and all it takes is watching a Ninja Turtle episode to give him courage while he takes them. My hope is that within the next month, he will be down to 1-2 meds and his multivitamin. He has done well off immunosuppression, so we can slowly start peeling off his prophylactic medications. The other issue with no ng is Jacob has to eat and drink enough on his own. He continues to do well with both. :) Here is Jacob posing after getting his tube out. <br />
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The next big news is that Jacob went on an outing to the apple orchards in Oak Glen! With his doctor's permission, of course, Dan, Judy, Ethan, Jacob and I all drove up on a weekday afternoon and it wasn't busy at all. We took some pictures (also shared on Facebook), and enjoyed apples dipped in caramel. It was so fun letting him do something "normal." Here are Ethan and Jacob at the orchards.<br />
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Jacob had his first hair trim since his hair grew back in. Barber Dan (Grandpa) gave him a little trim around the ears and neck. He looks so handsome! Here is Jacob getting ready for his trim.<br />
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Lastly, Jacob got to go out to a restaurant for the first time. I can't even recall the last time he ate a restaurant. Our family of four, plus grandparents and great-grandparents went out for brunch. Jacob was so excited on our way there, he kept saying things like "woohoo!" and "yay!" as we were driving there. It was awesome to see him so delighted! He loved looking over the menu and wanted to try almost everything. It was such a fun new experience for him. I can't wait to show him more of the world he has been missing out on the past several years! Here is a Long four generation picture.<br />
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He is not free to do everything yet. But as long as we avoid crowds, he can start venturing out a little more as he moves further out from transplant. The doctor said now that he is past 6 months, we can begin with some of his immunizations again. I thought he had to wait a year, but as I was going through some of my literature from Seattle, they do say that he can begin with some of them after 6 months. Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com2tag:blogger.com,1999:blog-32102368.post-63206750078175728382012-10-07T18:49:00.000-07:002012-10-07T18:49:17.256-07:006 months post transplantThis weekend marks 6 months since Jacob received his second bone marrow transplant. It's hard for me to think back six months to that weekend. He had just finished a week long conditioning of intense chemotherapy. His little body was torn down and I thought my heart might break. They kept him so drugged, he slept most of the time. Thankfully, Josh was there in Seattle to give us support. <br />
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Jacob has come a long way since then. His new donor cells successfully engrafted and he is slowly getting better day by day. So far he has been off immunosuppression (Cellcept) for a week. Since stopping that medication, his fevers also seem to have stopped. He still has cold symptoms and I won't know how his heart is doing until he has another ultrasound tomorrow. He still has a long way to go, but it feels good to have those 6+ difficult months behind us. I believe Jacob has definitely had more than his fair share of transplant complications. It's time for good reports for him from here on out! I will update again after tomorrow's appointment when I have more information on his current condition.<br />
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Visiting Grandma Joyce & Grandpa Paul</div>
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The boys watching their new ants</div>
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My handsome boys</div>
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Our first date since being home from Seattle</div>
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Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com3tag:blogger.com,1999:blog-32102368.post-67743465631739225282012-10-02T09:32:00.000-07:002012-10-02T09:56:01.636-07:00Day 178Sorry I have not written for a while. We actually had an ENTIRE week off from doctor's visits. It was nice to have that break and it gave me a chance to throw Ethan a birthday party on Saturday. It was really fun to have our family together to celebrate. <br />
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Ethan began coughing early last week, so we had to keep the boys apart the best we could until his coughing subsided. Ethan seems to be doing better now, for the most part. Thanks, Mom and Dad, for letting him play at your house after school. <br />
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I wish that our week off from the clinic meant that the fluid around Jacob's heart was clearing up, but after returning to the clinic yesterday, we found that it looked "the same, if not worse," according to the cardiologist, Dr. Degner. I suspected this might be the case. He still has cold symptoms and a sporadic low grade fever, and when I hold him I can feel his heart pounding. This issue could be treated with prednisone (just like almost everything, right?), but considering all the complications that arise every time Jacob has been on steroids and the fact that he doesn't seem to be in any discomfort, we decided to wait it out. We also stopped his Cellcept (immunosuppressant) yesterday with hopes that his body will be able to fight off whatever virus has been plaguing him and causing this problem with his heart (the theory being that once his immune system is no longer suppressed, it will be strong enough to fight the infection). Stopping this medication could also backfire, however. If it had any anti-inflammatory effect on his heart issue, then it could get worse. And then of course, there's always the issue of GVHD flaring up again. We are taking a leap of faith, hoping that this is the right direction. Please pray that it is. He got his flu shot a couple of weeks ago and is getting an ivig infusion tomorrow for some added protection. Please get your flu shots and have your children get theirs as well!<br />
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Just in case you're wondering why Jacob still has his ng tube in, he says he likes it and doesn't want me to take it out because we use it for his medications. He's not on all that many medications, but he is terrified of having to take them in his mouth. As soon as this tube clogs, we'll take it out and begin the battle with his oral meds. <br />
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On a brighter note, Jacob's 6 month chimerism came back 100% T cells, NK cells, and myeloid cells, and 99% B cells. It looks like the cells have found their new home and are hopefully here to stay. :) Also, Jacob is off night hydration. He is eating and drinking enough to sustain himself and switched over to oral electrolyte supplementation. His blood counts also remain stable. :)<br />
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This morning when I was dropping Ethan off at school, he asked me why I never smile. I thought that was strange because I've been consciously trying to smile more often because I don't want to always be a depressing person to be around. I guess Ethan saw through my efforts. He asked if it's because I'm always having to pick up toys. I wish. <br />
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Here are some pictures of what we've been up to:<br />
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Playing in the front yard</div>
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Boating with Grandma & Grandpa</div>
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Ethan's Angry Birds Birthday Party</div>
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<br />Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com0tag:blogger.com,1999:blog-32102368.post-29269021549661295152012-09-21T22:10:00.001-07:002012-09-21T22:10:00.921-07:00Day 167Josh informed me that my posts are way too technical and hard to understand, so I'm going to try keep the post simple this time. <br />
<br />
Jacob had another echocardiogram today which showed that the fluid around his heart looks about the same. I was hoping it would start looking better now that he's been off a couple of his more dangerous medications for a week, but I guess the good news is that it hasn't gotten worse. The doctors are thinking that it is probably a viral infection at this point. We go back for another echocardiogram on October 1st. <br />
<br />
Jacob's blood work showed some improvement, so it looks like for now we will not have to go back to Seattle any time soon. The doctor decreased the dose size of a couple of medications to see how he does, so we will hopefully be able to come off of all immunosuppression in about a week and a half. Also, Seattle received the slides from Jacob's gut biopsies and confirmed what Kaiser had already told us about Jacob's gut not having any gvhd. <br />
<br />
Jacob did well with his electrolytes on 5 nights of iv hydration this week, so we are decreasing him to 3 nights a week and will hopefully be done with that entirely in a couple of weeks. I'm hoping after that we can get his central line removed. That hardware coming out of his chest has been a part of him for 18 months. It's going to be strange and wonderful to not worry about caring for it any more. I'm sure it will take some getting used to for Jacob, too. He's had it for as long as he can remember. <br />
<br />
So all in all, I think Jacob is moving in the right direction. It's just going to take him a long, long time to clear the virus that he is fighting. Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com2tag:blogger.com,1999:blog-32102368.post-84926320489100428622012-09-15T07:21:00.001-07:002012-09-15T09:03:30.290-07:00Day 161After rechecking his heart on Thursday, Jacob was discharged from the hospital. The fluid has remained about the same. The cardiologist said based on the size and location of the fluid build up, the risk of piercing his heart to try to drain it would be too great. So for now they are monitoring him closely to make sure it doesn't get worse. They have no way of knowing what caused the pericardial effusion without actually testing some of the fluid. It is most likely a virus based on the positive rhino nasal culture he had this week and the low grade fever he's had for the past couple of weeks, but other causes could be medication or gvhd. He also came back positive on a nasal culture for mrsa, something he most likely picked up from the clinic or hospital. It's not causing any problems right now. It's a type of bacteria that he would not be able to fight with CGD, but they think his new cells can keep it in check. We just have to monitor him closely for signs of infection, like always. <br />
<br />
While we were in the hospital, Jacob stopped his tacrolimus and switched over to sirolimus for his immunosuppressant. For 2 days in a row his lhd improved, which seemed to indicate that the tacrolimus was the offender causing his red blood cell destruction. However, on the third day, his lhd jumped right back to where it was. Jacob is now switching off sirolimus to cellcept to see if we have any better luck. If our Kaiser team is unable to see improvement in Jacob within the next couple of weeks, then Jacob and I are heading back to Seattle. Kaiser has already started the authorization process. <br />
<br />
Jacob was able to stay off tpn and even came off feeds Wednesday as he began to eat more. His favorite food in the hospital was chicken, but now that we're back home, he's all about the chips and salsa again. He still gets iv night hydration to get his electrolytes and to fill in any gaps in his fluid intake, and I can supplement his diet with some feeds if he is not eating enough.<br />
<br />
Naturally with everything that has been happening to Jacob, I've been struggling with exhaustion and discouragement. It's difficult to hold on to hope when things continually go wrong for him. I still second guess myself if we made the right decision pursuing bone marrow transplantation. Some lucky CGD patients actually live a long and relatively healthy life. We seemed to have made matters worse for him.<br />
<br />
Ethan's 7th birthday is right around the corner. When we first returned home from Seattle, I thought we'd be in a good spot with Jacob that I could throw a party for him. Now I'll be lucky if I'm even in town. It's hard making future plans and moving on with life when things change so quickly from one day to the next. I've learned I have to always have the laundry done just in case we have to whisk Jacob back to the hospital for a week or more at a time. I thought being home would be easier, but to be honest, there is just more to try to keep up on in addition to Jacob's weighty health issues. Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com4tag:blogger.com,1999:blog-32102368.post-4129062016851012922012-09-12T09:03:00.001-07:002012-09-12T09:03:42.244-07:00Day 158We are back in the hospital. I brought him in on Monday because his temperature started getting a little higher and his heart still seemed to be working really hard even though he got blood on Friday. The doctor also wanted to watch his electrolytes as he stopped his tpn and started on feeds. The transition off of tpn has gone smoothly so far. He tolerated feeds for 15 hours yesterday and he actually ate some dinner. This morning he requested milk and water and had several bites of a peanut butter and jelly sandwich. I asked them to hold the feed to give him a chance to eat more, and they said that was fine. Now onto the bad news. Monday night he had a chest X-ray to check for pneumonia. Thankfully his lungs looked fine, but his heart appeared enlarged compared to past X-rays. So yesterday he had an echocardiogram to investigate further and it turns out he has fluid built up around his heart which is making it have to pump harder. The inflammation doesn't appear to be blood pressure or virus related. He has a repeat echo today to see if it is worsening. We are hoping and praying that it will clear up on its own. Also, his blood cells continue to self destruct. As he comes off tacro this week, we hope that issue will resolve. Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com2tag:blogger.com,1999:blog-32102368.post-5754160101123304292012-09-07T14:54:00.001-07:002012-09-07T14:54:54.435-07:00Day 153Jacob continues to struggle with various problems. Earlier this week we noticed him getting tremors and getting dizzy and discovered that he was hypoglycemic. Further investigation revealed that his cortisol level was zero, which indicated that his adrenal glands were not working from long term use of steroids. He started on an oral hydrocortisone immediately and seems to be doing better in that aspect. Another problem he's been having is a low grade fever for the past week. All cultures have come back negative, so we are going to stop the neupogen injections to see if he was having a reaction to that. The final problem is that his hemoglobin continues to drop. He is getting a blood transfusion today, so that will hopefully perk him up. He is going to taper off his other immunosuppressant, tacrolimus, because his doctor has ruled out everything else and he believes the problem is medication related. Luckily that is an option because he does not have any evidence of gvhd. Jacob is eating a little, but he is still on 16 hour a day tpn and is now also tolerating some slow feeds, so we are hoping to slowly transition him off of the tpn. It's hard having him hooked up to pumps for the majority of the day. We have to follow him around the house with his iv pole any time he wants to move. It's rough, but better than having him stuck in a bed in the hospital. I'm glad we are able to care for him at home. <br />
<br />
Here are some pictures from today's visit. Our appointment has lasted 8 1/2 hours and we still have to stop by the pharmacy. Plus now we are going to hit LA commute traffic... But like I said, at least we are not in the hospital and we can sleep in our own beds.<div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitWPxZ_B7oAsRcsa-p1ejnfpqgpJ1RZaQl7dTPtNPaIQPqvsW-dLyGVf1VPh9ddxcYRdKuru12nu1cVNeZ7UQqjkt1wBe-tnNEZdDLXSFAaY6-bcmbJWmUyoDqWA0cTCvk142tgQ/s640/blogger-image--422613558.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitWPxZ_B7oAsRcsa-p1ejnfpqgpJ1RZaQl7dTPtNPaIQPqvsW-dLyGVf1VPh9ddxcYRdKuru12nu1cVNeZ7UQqjkt1wBe-tnNEZdDLXSFAaY6-bcmbJWmUyoDqWA0cTCvk142tgQ/s640/blogger-image--422613558.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK6KMw28K5QHsAsU-E4BIIX1GXM7y3t4Lu__Aw9rAghwP-yYMWvY0MgZx7TKD51RLvRD2JIVrBGQbdnaYwZPOOF2ThfRSGUdIYb6nZdb-OBINRwLRJMHtQzDyKG-45_6OPkkSI2A/s640/blogger-image-553471265.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK6KMw28K5QHsAsU-E4BIIX1GXM7y3t4Lu__Aw9rAghwP-yYMWvY0MgZx7TKD51RLvRD2JIVrBGQbdnaYwZPOOF2ThfRSGUdIYb6nZdb-OBINRwLRJMHtQzDyKG-45_6OPkkSI2A/s640/blogger-image-553471265.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4v2IDSeAubw82n0t9-PfstDGi3XakF3rbZAXu2ABCQv-JgygMIIDUqzG7gVwq2Ef1SORFDr2GgGQU1IUP_43L-_IvmWzMDqn6-D0KfBnkMKNT1jBymfnHnKTEHiBONvWU-kLW3A/s640/blogger-image--1179464161.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4v2IDSeAubw82n0t9-PfstDGi3XakF3rbZAXu2ABCQv-JgygMIIDUqzG7gVwq2Ef1SORFDr2GgGQU1IUP_43L-_IvmWzMDqn6-D0KfBnkMKNT1jBymfnHnKTEHiBONvWU-kLW3A/s640/blogger-image--1179464161.jpg" /></a></div>Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com2tag:blogger.com,1999:blog-32102368.post-42633811592836054042012-08-31T05:04:00.001-07:002012-08-31T05:04:14.634-07:00Day +146 still hereIt's 4:17am and after several futile attempts at getting Jacob back to sleep, he is now looking at books in his bed. We are hopefully getting discharged today, not that he's necessarily doing a whole lot better, but at least the pneumatosis is all cleared up. I just changed 5 diapers in the last hour, which is pretty much how it's been throughout the day time hours as well. After all the tests and procedures that have been run these past two weeks, Jacob came back negative for gvhd and is now up to 100% engraftment with his new donor cells. All respiratory and blood cultures came back negative for infection. Even the rhinovirus cleared after 5 days and never caused any symptoms, thankfully. The one thing that was discovered after his million dollar work up however, was a positive pcr result for the cursed adenovirus on his gut biopsy. Visually, his gut looked perfectly healthy throughout, but pcr's are incredibly sensitive and picked up some residual past or present virus. Given the toxic nature of the treatment, both our dr here and the Seattle doctors don't want to treat at this point. Our Seattle doctor has a child in renal failure because of cidofovir, the drug used to treat adenovirus. Jacob has already had to be on that treatment for several weeks back in June and July when his blood adenovirus count was up to 9 million. For now, it is negative in the blood, respiratory system, and stool, so we are just going to sit tight and hope he can keep it under control. Being off steroids will hopefully help. He gets to start tapering off his other immunosuppressant around September 18th if there are no signs of a gvhd flare. <br />
<br />
Because of Jacob's anorexia, we are going home on 16 hours/ day of tpn. It feels like such a huge step backward. With all the diarrhea, disinterest in food, and dependence on tpn, it feels like we are back at the beginning. I have to remind myself of the big picture: Jacob successfully engrafted his new cells, which is the reason we went through all of this in the first place. It's just hard to get to a point where I feel like I can actually rejoice in that because we are constantly having setbacks. Jacob started an appetite stimulator yesterday and ate a little in the morning. We had also been running a very slow formula feed through his ng, but he started complaining of nausea, so we stopped it. Getting food into his tummy seemed to backfire with a day of non stop diaper changes. <br />
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Jacob is back to sleep so I'm going to try to sleep some as well while I have<br />
the chance.Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com2tag:blogger.com,1999:blog-32102368.post-67665314154656993622012-08-25T18:29:00.001-07:002012-08-25T18:58:04.168-07:00Day +140 Still in the HospitalI was hoping we'd have Jacob home by now, but Thursday afternoon he started having really bad incontinence. I think I changed 25 diapers yesterday. Josh is with him today and it sounds like he's doing about the same. They had introduced clear liquids back into his diet, but with this new symptom, decided to put him back on 100% gut rest. Jacob had a gut ct scan today and will have an endoscopy next week. Hopefully the problem can be identified so we can get him feeling better. I hope it's not gvhd, because I don't want him back on steroids. That is what causes pneumatosis, which by the way, looked better in Jacob's Wednesday X-ray. Jacob is still in good spirits and looks well despite the setbacks. All the other tests that have been run so far haven't turned up anything to explain his symptoms. All his infectious cultures remain negative (except for rhino virus... aka the common cold, which he picked up in the hospital... most likely from a nurse, since I can hear them coughing throughout the day.... argh!), his whole blood chimerism came back 90% donor, which doesn't mean a whole lot to us because we have nothing to compare it to. We are awaiting the <i>sorted</i> chimerism results which were sent up to Seattle. Those results will be more significant since we have past results to compare them to. His bone marrow aspiration preliminary findings are that the marrow is producing cells just like it should. No specific markers have been identified that would suggest an intolerance to his tacrolimus (immunosuppressant). They switched his antibiotic with another one, to see if he was having problems with that. Still no change. The only stone left unturned is the GVHD issue, which will be answered with the results of his scope next week.<br />
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Jacob having some play dough fun with Grandpa Taylor and Aunt Mackenzy</div>
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Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com1tag:blogger.com,1999:blog-32102368.post-78938376086876977862012-08-20T14:12:00.000-07:002012-08-20T14:12:26.012-07:00Day +135Jacob definitely has pneumatosis. It was identified in two different areas in his intestines. He has been on gut rest since Thursday night. He will have an xray on Wednesday to check it again. If it's starting to look better, he might be able to start eating again. <br />
<br />
Another issue is that Jacob's counts have all been trending down lately. He has continued to need nuepogen in the hospital to have a safe wbc count and he needed a blood transfusion yesterday. Things that could cause this are: graft failure, medication intolerance/toxicity, gvhd, or an infection. Blood has already been sent off for an unsorted chimerism which should come back on Wednesday. If a problem is detected in that result, further investigation of his graft would include another bone marrow aspiration. That will give us some answers as far as his graft. He also has further studies currently being processed to check for intolerance to his medication, namely tacrolimus. He doesn't show any outward signs of gvhd, so when his pneumatosis is controlled enough for him to start eating again, if he has no signs of nausea, abdominal discomfort, or diarrhea, they will probably dismiss that theory. If he does show any of those signs, however, then they want to proceed with a scope. So far he has come back negative on every type of infectious culture that they've done, so that is probably the least likely culprit. <br />
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<div style="text-align: center;">
Three of my Heroes</div>
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<br />Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com1tag:blogger.com,1999:blog-32102368.post-25315380663295827822012-08-16T19:56:00.000-07:002012-08-16T20:03:47.498-07:00Day +131 Back in the HospitalJacob had to be readmitted this evening because they suspect pneumatosis. Seattle Children's thought he had the same thing a couple months ago based on an xray. After a few days of agonizing gut rest, he had another xray and ended up not having it. But here we are again. Jacob has been gradually eating less and less and ended up back on ng feeds this week. He's also been having loose stools and threw up a couple of times early this week and started back on anti-nausea medication. An xray revealed what they are calling pneumatosis again, so for now he is back on gut rest, meaning he can't take anything by mouth. It's so hard not giving him food and drink when he asks. Hopefully further investigation will show that he doesn't have it this time either, but who knows. There has to be some explanation for his symptoms, but I really hope it's not penumatosis or GVHD. He finishes his pred taper on Saturday and I was so looking forward to getting him off steroids and immunosuppressants. His other immunosuppressant is supposed to start tapering in a month. I hope that plan can stay on course. <br />
<br />
This past week Jacob also had to get shots of neupogen in his leg for four days in a row. His ANC was down in the 300s, so he really needed a big boost of cell activity. He was very brave, and thankfully, we had a nurse come out to administer the shots. I really didn't want to have to give him those shots after all the other unpleasant things I have to put him through.<br />
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It's frustrating and disheartening in what feels like huge strides backwards. I am thankful to have my wonderful husband who sleeps in the hospital so I don't have to. I am also thankful to my in-laws who jumped right in to help with Ethan while we are getting situated at the hospital again. I am so blessed to have such a wonderful and supportive family. Ethan was excited to spend the night with them and Jacob was happy to come to the hospital because he wants to play in the playroom again. :) My boys are so cute. I can learn a lot from them, such as looking for the positive in any situation. <br />
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Please continue to pray for Jacob. We are clearly not out of the woods yet and there are still a lot of things that could go wrong for him. Please pray that his stomach will heal so he can eat again and we can go home soon, and that the doctors will be inspired and guided as to the best way to diagnose and treat him. Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com3tag:blogger.com,1999:blog-32102368.post-56735858214944506112012-08-07T11:34:00.000-07:002012-08-07T11:34:20.341-07:00Day +122Life has been non stop since getting home from Seattle. Our family reunion celebration was cut short. Saturday morning, Jacob woke up fevered and so I called the hospital to have him admitted. Josh has been doing hospital duty this time to give me a break and a chance to spend time with Ethan. I'm sad that he had to go back in so soon, but grateful to have him near home so we can all visit him daily. They never found the source of the fever, but thankfully it went away and hasn't come back. They are discharging him this afternoon. Also, Jacob's adeno pcr from last Wednesday came back negative! This is such a relief. His white blood cell count has been really low, so he's probably going to need to get shots of gcsf a couple of times a week until he can maintain a safe level. We can administer these at home, but hopefully we can get a home health care nurse to come out and do it. I know J is really scared of shots and I would hate to have to do that to him.<br />
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Ethan started first grade yesterday and I was so happy to be there for him. I have missed him so much! I hope he has a great year! He has been such a wonderful big brother to Jacob through all of this and he continues to make us laugh. I'm grateful to have Josh helping with hospital duty so I can focus my attention on Ethan.<br />
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Ethan's First Day of First Grade</div>
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Ethan finds his buddy before school starts</div>
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We got ice cream after school...</div>
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then drove to L.A. to visit Jacob.</div>
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Scary dinosaur!</div>
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Jacob makes a wonderful doctor.</div>Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com1tag:blogger.com,1999:blog-32102368.post-60802647488844204502012-08-03T08:52:00.003-07:002012-08-03T08:52:47.292-07:00Day +118 We're Home!We made it! I can't even begin to start to describe how wonderful it is to be home! <br />
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We could not have made it through this arduous separation without the love and support of our family members, our ward family, and our wonderful friends. Thank you to everyone who has helped us through this. Our hearts are full of gratitude.<br />
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On Monday, we had our last clinic visit and infusion at the Seattle Cancer Care Alliance. My parents flew in Monday evening to help us pack the car, to drop us off at the airport on Tuesday, and to drive our car home. Besides me being nervous about how crowded the airport was for fear of germs and being keenly aware and tense about every cough and sneeze on the airplane, the flight home went smoothly. Time will tell if Jacob picked up anything or not.<br />
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Here is Jacob getting his last infusion at SCCA.</div>
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Jacob and I getting dropped off at the airport and saying goodbye to my parents</div>
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(who made it home safely last night with the car)</div>
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Jacob is SO excited to get home. Here he is on the plane.</div>
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Josh and Ethan picked us up from the airport. The boys were so excited to be back together again. It was such a sweet reunion. </div>
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The boys are back together! Their eyes just sparkle with love for each other.</div>
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Jacob and Daddy missed each other!</div>
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As we were driving up our street I noticed an unusually large number of parked cars. Suddenly I noticed some people waving and holding signs. As we got closer I realized they were church friends. As we turned the last corner onto the cul de sac, I saw that the whole street was was lined with ward members cheering and waving to us. Through tears I was able to grab the camera and capture a few pictures. Josh rolled down the windows so Ethan and Jacob could wave back. I was overcome that so many people were rejoicing with us. We are blessed to belong to an amazing ward family.</div>
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The next several pictures are the ones I took as we drove up to our house.</div>
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Jacob and Ethan were so excited with the celebration! </div>
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Jacob proceeded to do several fancy dance moves for everybody. :)</div>
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Not only did we have a huge, warm welcome on the street, but I quickly discovered that our whole house had been scrubbed and sanitized from top to bottom. It was immaculate! Josh told me how our family, friends, and ward members had volunteered their time and cleaning expertise. It felt so wonderful and welcoming to walk into a clean home.<br />
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Then to top off the perfect welcome home, our ward provided some delicious meals to give us a chance to get adjusted. Thank you so much to everyone who pitched in on the meals and our house.<br />
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There were just so many who helped! We appreciate it more than we could ever possibly express. We feel so loved and blessed. Thank you from the bottom of our hearts.</div>Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com4tag:blogger.com,1999:blog-32102368.post-42590418738037647042012-07-26T12:32:00.001-07:002012-07-26T16:14:50.249-07:00Day +110Our flight is booked and we are heading home on Tuesday. Hooray!<br />
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Jacob has been doing well. He had his adenovirus treatment on Monday and the doctor wants to do one more next Monday before we leave. Even though the latest adeno count is 3200, she thinks since his kidneys are handling the treatment, it would be the safest thing to do. She told me she has had patients die from adenovirus, and since it was found in all of Jacob's systems, blood, urine, gi tract, and respiratory, she wants to give him as much protection as possible. Jacob also got some gcsf this week to boost his ANC, which has been slowly declining the past couple of weeks. Tuesday he got an ivig infusion and had his final review conference. Monday will be his last appointment here and then we will go home the following day. <br />
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He is a long way from having a functioning immune system, but he is stable enough to go home and continue treatment there. <div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9IDJRUUZpT8wHLSCF5w8ACi4wsorREqTK0y8jiEYhbez1Y0pBK3_CIvkg8eCsdUGlt7tKlee6lntseKUNNz2GSV-Gr_CgxMoQaPCDD_lFH6Mx0ho9y1BASOabcakNAeElTFdBvg/s640/blogger-image--1232431045.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9IDJRUUZpT8wHLSCF5w8ACi4wsorREqTK0y8jiEYhbez1Y0pBK3_CIvkg8eCsdUGlt7tKlee6lntseKUNNz2GSV-Gr_CgxMoQaPCDD_lFH6Mx0ho9y1BASOabcakNAeElTFdBvg/s640/blogger-image--1232431045.jpg" /></a></div>Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com3tag:blogger.com,1999:blog-32102368.post-90028585851542744572012-07-21T11:58:00.000-07:002012-07-21T11:58:06.891-07:00Day +105 Homeward BoundWe successfully made it out of the hospital on Tuesday. It wasn't easy though. J's ng tube clogged at 3am and I worked on trying to unclog it until he woke up at 8am. We finally gave up and just had to pull it out. That tube had lasted about 2 months. The nurses tried getting a new one in 3 different times, one of the attempts lasting for 45 minutes, but he was clamping down his throat and gagging so it kept getting stuck in his throat. It was heartbreaking. Jacob even was saying he would just take his medicine in his mouth, which I was willing to let him try, but after another 45 minutes he had only been able to swallow 3-4 of his 15 morning meds. It just wasn't going to work. Before the third attempt, they gave him a dose of adivan to relax him, but it didn't help. They tossed around the idea of doing it under sedation, but that would mean we'd have to stay another night because he'd have to be npo. Around 1:00pm, the two nurses who had been trying finally gave up and called in a third. She was able to get it in on her first try. It was a huge relief to get it in. Hopefully by the time this ng tube wears out or clogs, he will only be on a few meds and be able to move on without one.<br />
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It will be six months, almost to the day, when we will be heading home to be reunited as a family. Our last appointment up here should be July 30th. We are making preparations to fly home on July 31st. We already have an appointment scheduled with Jacob's home doctor for August 1st. <br />
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Jacob's Epstein Barr Virus load has come back undetectable the last couple of times, so it seems he's got that under control. I'm so glad he didn't have to get treated for that. His latest run on the adenovirus came back at 8,300. Can you believe it was 9.4 million just a few weeks ago? The infectious disease doctors say we can stop treating it when it drops under 10,000, but his out patient dr wants to do one more cidofovir treatment on Monday, then hopefully he will be done with that. I worry about his kidneys. <br />
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Considering everything that has happened in the past month, I consider it a miracle that he is well enough to go home at this point. The doctors here have been incredible. Their expertise and experience is beyond anything we ever could've hoped for. I'm so grateful we came here for Jacob's transplant. I am excited to go home, but sad to have Jacob leave their care. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg710McaOxm2o7Bvc1nrYBMWMa81SP8MfxKY9fpyDLFkw7o2PvI_jpfUCrj8X2GKORzrYQ-VeGgDl21mjyYPBhIGzz7ZG_u_5UDwTTybR1owpz8QC_Y3S9tvjCsS98dtGNSUvFvRg/s640/blogger-image-2113399751.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg710McaOxm2o7Bvc1nrYBMWMa81SP8MfxKY9fpyDLFkw7o2PvI_jpfUCrj8X2GKORzrYQ-VeGgDl21mjyYPBhIGzz7ZG_u_5UDwTTybR1owpz8QC_Y3S9tvjCsS98dtGNSUvFvRg/s400/blogger-image-2113399751.jpg" width="400" /></a></div>Kylenehttp://www.blogger.com/profile/05235252832412987052noreply@blogger.com0