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!

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.

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

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