Sunday, October 7, 2012

DAY +144- Appreciating the small things

I am sorry that it has been so long since I last posted- Connor is still doing really well and is as happy as can be.  In the past 2 months we have been able to enjoy:

1. His PICC line was removed right before school-he hated his line and is so happy that he doesn't have to get all wrapped up to take a shower and he can climb trees and monkey bars without his mom hovering over him.

2. Connor started his 2nd grade with the rest of the class and he also got his former Kindergarten teacher, Mrs. Buch- who is just the NICEST teacher.  He is thriving in 2nd grade despite being separated from his 2 best buds and we are so grateful that he is able to go to school.  I am especially grateful because I don't think that I am the home-school type of mom-i just don't have that creative gene that makes a child LOVE learning, I am more of the workbook page mom-boring!

3.  Connor only has to go to the hospital once every 4 weeks- he now needs to get "poked" again for his infusions but now that he knows the alternative is a PICC line- he does not complain at all about getting poked. He was always very brave before but he would always question why he has to go through this and would express his displeasure-but now he is just a real champ!

4.  He is able to participate in some activities again- he is joining cub scouts and we may be selling some wreaths in the near future :) He looks really cute in his uniform and we are hoping that he will be able to go on the camping trip this weekend. 

5.  Connor's hair is starting to grow in thicker and much darker then before.  It is actually prickly like Asian hair whereas his hair before was very fine and soft.  He had this one little spot of blond hair on the back that is not growing back but it's OK.  The rest of his hair looks fantastic.

6.  We are scheduled to take our first professional family pictures in almost 6 years next Saturday.  We were so lucky that my cousin cancelled her session and we were able to get in with an awesome photographer. I am stressing out about outfits but it's all a good stress. 

7.  We had our most dreaded conversation with Connor, where we told him that his BMT failed.  I had slowly been planting the seed that nothing was guaranteed but we were waiting to pass the 100+ day to make absolutely certain that a miracle didnt' happen.  It was a conversation that I feared but as always, Connor made it so easy.  He took it in stride, let it digest for a day or two and then started slowly asking the hard questions.  I thought there would be screams and tears but it was all very logical.  He then told me that he didn't want to have another bmt right away b/c he lost so much of the summer and that maybe when he was 10 years old he could do it again. 

8.  We are planning his 8th birthday party!  What a celebration that is going to be! We are so lucky!

I am really trying to embrace and appreciate all the 'moments' in our daily lives.  I have given up on figuring out what the greater purpose and plan is. I am trying to find peace in the fact that I am where I am supposed to be and Connor is where he is supposed to be.  That we are only promised today and we just have to laugh more, play more monopoly, have more tickle fights, thumb wars and cuddles. 

We are still facing many challenges and ask for your prayers specifically for:

Joe Park and his family - it has been a little over 3 months since Andrew passed and they are walking in his honor on October 20th and raising money for the Leaukemia and Lymphoma society.  I can't even begin to imagine the pain this night will bring upon them.  If you would like to support them pleas click on the link below.
http://pages.lightthenight.org/il/WSuburbn12/JPark

Nancy Bender - she was Connor's Nanny for almost 2 years when we first moved to the suburbs.  I may have wrote about her before, but she suffered a massive heart attacke at 52 years old (shortly after we found out about Connor's bmt failure).  She has been in and out of the hospital for as long as Connor was in the hospital. Her only chance of long term survival was a heart transplant. We just received news that she is not a candidate for heart transplant and she was released from the hospital.  She has endured so much during this past few months and she is teaching us that it is all about the "quality" of life and not the quantity of life.  Connor LOVES her with all of his heart and we haven't had the courage to tell him what all of this means. My heart breaks for him and for her.  She has been critical in brining him out of his shyness and she has introduced him to so many adventures- and we will never be able to play monopoly without remembering the hours and days she spent playing that game with him.  As he grows older and memories fade, I am certain that Connor's earliest memories will involve Nanny.  He talks about her everytime he sees Pepsi or green gummy bears or anything Disney.  Please pray for comfort and peace for her and her daughters as they go through the most challenging of times.  Please pray that Connor and I will get over our congestion and sore throats so that we will be able to visit with her again.   

Peter & Kim Cho - they are waiting for further testing and results from her PET scans to see if she is still in remission. The first 5 years are critical - please pray that she is still in remission.  We need to have one of our three stories end in a good way! (The Chos introduced us to Andrew's family as Kim was undergoing chemotherapy during her battle with cancer, and shortly thereafter Connor and Andrew had their bone marrow transplants - so it always felt like our journeys were intertwined).

Connor's immune system is stalled. The good news is that it hasn't gone down but there has not been any movement in any of his numbers.  His labs almost look identical from one month to the next which is not good b/c his immune system is only half of what it was pre-transplant.  He also has a cough, congestion and sore throat but no fevers. All symptoms of a cold but it is now going on 1 week and no signs of improvement.  We are waiting for our next labs in October to see if there is any change and then will have to make a gameplan before the flu season hits here. 

There has been so much HOPE and JOY followed by such tremendous PAIN and LOSS that it just doesn't make sense.  But I am trying to live for each moment and be forever grateful for the memories that I am sharing with my son.   I am learning to embrace receiving help and love from all the wonderful friends, family, neighbors and strangers.  I am really enjoying planning for the future (we were "stuck" with this disease and bmt search for almost 4 years), we are hoping to go to Cali for Thanksgiving and a trip to Disney world is calling us. 

Thank you everyone for sharing in this journey with us-our burden was made lighter by your friendship. 

4 comments:

Jennie said...

Oh Stephanie, you do not need to apologize for a delayed update! I see Connor coming out of school with his little independent spirit, it's like he doesn't even know the weight he is carrying (I might say the same thing about you!). Thanks for letting us in on this journey, we are here to support you as much as we can. Griffin hopes he can come on the camping trip as well :).

Maggie said...

Prayers and love are with you each and everyday! Here for each of you day and night :-)

XOXOXOX

Michael Cisneros said...

Praying for you guys!

Kimberly said...

Steph, this was such an encouraging post. Thanks so much for the update. We often wonder how Connor and you all are doing and continue to pray for him. If there's anything we can do please let us know. Prayers for you. -Peter & Kim