Summer Fun

I 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).

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.

Now onto the photos!

Matching outfits :)

The boys love being at the same school.

The best Mother's Day a mom could ask for.

Ethan earned the highest reading score in the whole 1st grade!

Father and Sons Campout with Grandpa (Jacob's First!)

Preschool Graduation

Teenage Mutant Ninja Turtles Craze

Jacob's First Time Bowling

Playing at the Park

Cosmic Miniature Golf

Disney, Disney, Disney!

Make-a-Wish Night at the Zoo

Celebrating our 9th Anniversary in Big Bear

One of our many visits to the library

Jacob's 5th Birthday Swim Party!

Ethan earned the Belt of the Week at karate!

My mom & me at the shooting range

Our nephew Colin's 2nd Birthday Party

A happy Father's Day, me with my dad

The boys and me out boating with my parents

That pretty much gets us caught up!  Wishing you all a happy, safe summer!

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!