A New Beginning

Today is the one year anniversary of Jacob's second bone marrow transplant.  It's incredible to see how far he has come.

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.

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.  

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. 

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.  

On Monday, Jacob started preschool!  Here he is with his amazing teacher on his first day of school.

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!

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!

 

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!

Day +340

It'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.

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.

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.

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 free speech therapy with the district.

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.

Day +320

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.

Here are the highlights:

Jacob had his make-a-wish interview and wished to meet spider-man.  He also wished to be 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 is my baby and looked so darn cute sucking his thumb.  I am really proud of his willpower though.  Amazing child!

Ethan with his teacher, Mrs. O

Ethan with Grandma Judy

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.

Day +300!!

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.  

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.  

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.  

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. :)  

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.)

Day +280

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.

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.

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.

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.

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.

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.

Here are some of my favorite shots from vacation:

Boating Fun

Cousin Love

Group Shots

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.  

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.