Monday, December 24, 2012

Day +261

It'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.

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.

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.  

One of the fun things from this month was I was able to help out at Ethan's gingerbread decorating party at school!

Here are my two little Santa's helpers!

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.  

Monday, December 03, 2012

Thanksgiving (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.

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.

We loved the snow!

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.

St. George Temple Visitor's Center

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.

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.

Tuesday, November 13, 2012

Day +220

I'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.

 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!

Here's what Jacob's central line site/dressing looked like.  
Imagine a 2-4 year-old having to live with that thing for almost two years!
It was a constant concern for infection and/or being caught and yanked on, 
not to mention the daily flushes & locks, and the weekly cap changes & dressing changes.

Bye, bye, central line!  
Thanks for saving us 19 months of pokes and pricks!
You were a life-saver!
(Yes, we did keep it.)

 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! 

 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.   :)

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. :)

Ethan showing off his karate moves

 Ethan's first art piece

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!

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.

Monday, October 29, 2012

Day +205

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.  

Riding bikes!

Playing at Grandma and Grandpa's house

Best Friends

Happy Halloween, from the Mario Bros!

Thursday, October 18, 2012

Day 194

At 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.

Here is all the big news since my last post:

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.

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.

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.

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.

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.

Sunday, October 07, 2012

6 months post transplant

This 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.

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.

Visiting Grandma Joyce & Grandpa Paul

The boys watching their new ants

My handsome boys

Our first date since being home from Seattle

Tuesday, October 02, 2012

Day 178

Sorry 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.

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.

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!

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.

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. :)

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.

Here are some pictures of what we've been up to:

Playing in the front yard

Boating with Grandma & Grandpa

Ethan's Angry Birds Birthday Party

Friday, September 21, 2012

Day 167

Josh 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.

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.

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.

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.

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.

Saturday, September 15, 2012

Day 161

After 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.

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.

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.

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.

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.

Wednesday, September 12, 2012

Day 158

We 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.

Friday, September 07, 2012

Day 153

Jacob 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.

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.

Friday, August 31, 2012

Day +146 still here

It'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.

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.

Jacob is back to sleep so I'm going to try to sleep some as well while I have
the chance.

Saturday, August 25, 2012

Day +140 Still in the Hospital

I 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 sorted 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.

Jacob having some play dough fun with Grandpa Taylor and Aunt Mackenzy

Monday, August 20, 2012

Day +135

Jacob 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.

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.

Three of my Heroes

Thursday, August 16, 2012

Day +131 Back in the Hospital

Jacob 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.

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.

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.

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.

Tuesday, August 07, 2012

Day +122

Life 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.

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.

 Ethan's First Day of First Grade

Ethan finds his buddy before school starts

We got ice cream after school...

then drove to L.A. to visit Jacob.

Scary dinosaur!

Jacob makes a wonderful doctor.