Tuesday, May 29, 2012

May 29- DAY +12

I hope everyone had a wonderful Memorial Day weekend and was able to spend some time with family and loved ones. We had a very relaxing weekend and managed to stay out of the hospital -YEAH! Connor's hair started to fall out in wisps over the weekend and he would notice it while eating or playing on the ipad. He was so concerned that he would go bald and just didn't want to lose his short military hair. We played it casual and told him that he may go bald that the doctors said that this may happen but didn't make a big deal of it - just tried to brush it away so he wouldn't notice the quantity, but my heart was breaking for him. Finally, on Monday night, the hair started falling out in massive clumps, quite shocking at how much could fall out at a time. Connor was so irritated by the short stubbles and hair all over his pillow and clothes tht he was having difficulty falling asleep. He asked us a few times if his hair was 100% definitely falling out. We told him most likely yes and would he like to just cut it off now and be comfortable. He gave me this sad look and at first said no, that maybe it won't all fall off but within minutes after more clumps falling off, he decided to just do it and we shaved his head at 1:30 am! I can't tell you how proud I am of him for making such a wise and mature decision and the best part is after it was done his comment was "I have never seen my entire head before, let's explore it"- what an amazing attitude! This attitude was exactly what I needed at the time and he showed me so much strength and perserverance that all I can do is Thank God for this amazing boy. (Btw, no tears were shed and he still has a good chance of winning that bet from me). And then he told me that I am NEVER to take a picture of his head - so unfortunately no pictures at this time - but he looks really cute and kind of reminds me of Caillou. We also received word that our 17 year old friend who received his transplant the day before Connor started to engraft over the weekend. We are so happy at the news! Please pray that he will not have any GVHD. We are excited to see what our lab work will show today. We are hoping that with his hair falling out - that this is the first sign of engraftment as well but will find out more this afternoon. I think the doctors are concerned with his platelets and told us to expect a platelet transfusion today but he hasn't had any unusual bruising so I am hoping to avoid the transfusion. Please pray that we are also engrafting and no GVHD and please pray that Connor will get used to his new look. Have a great day!

8 comments:

Anonymous said...

Though I only know you and your family through following you on FB and reading this blog, it's not difficult to see where Connor gets his strength from. God certainly knew what He was doing when He paired your sweet, little boy with with you and your husband. I pray double portions of blessings upon your family.

Maggie said...

Stephanie, Steve and Connor:

There is not a minute in the day, that I do not think of you or pray for you. You are the strongest family I know. I love you guys!! Please remember, I'm always here for you!!

James said...

Great to hear! Also, way for Connor to be a trooper. He'll prolly still take some of his cues from you guys, so stay strong!

Laura Garich said...

Sue yes Sue,

I am thinking of you and steve and how strong you two our with so many challenges in your life(you know what I mean) your both so strong you both are my inspiration that no matter what challenges life throws you just deal with them. I love you and am happy things are going well. Your my inpiration! Kiss that boy for me well don't tell him its from a girl ewww. Keep in touch,stay strong!

Your OLD friend
Laura G

TD said...

Oh he is melting my heart!! His curiosity and sensitivity and strength are amazing. You and Steve are in my constant thoughts and prayers. Your empty house is my reminder all day long. The kids in the neighborhood are all asking about Connor. Pretty quiet over the weekend with the S's and P's out of town but we had plenty of time with Carson and Delaney! Delaney and Marissa had a pretty cute conversation about God taking care of Connor.. These last days of school without the Park/Lims around is heavy on our hearts. We love you guys and I am praying specifically for some sign of grafting... and saying specific prayers for strength... you guys are amazing!
Much love from Ridge,
Teri

Anonymous said...

Meghan would love to see Connor..the only show she'll ever watch is Caillou...she'd love his look. Ridge Avenue is missing Connor and keeping him in our prayers. Hoping for good news about the engrafting.
Heather

Kathy in Korea said...

This is my first post because with every post you put up I am brought to tears to the point of finding it difficult to say anything, especially something encouraging, when i'm just a near mess myself. But I'm slowly finding the strength now, as I slowly catch up on your journey, and apologize for being such a wuss. Thank God I didn't bet anyone 2K that I wouldn't cry! But why does Connor have to be so darn cute, so darn the unassuming 8(?) year old boy he is, and so darn hysterically funny in his persistence and inquisitiveness? And why does Sue have to be so real, and such a good mother, and such a help to future kids who have a similar road ahead of them? I am so proud to be related to you!! And why does Steve have to first get a mohawk, then shave his head, all of which just makes me baul, baul and baul some more..

I am praying specifically for no GVHD, for some serious signs of grafting, and also for the health of Sue and Steve throughout this process.

Connor, I hope we can one day soon go shopping for toys/games together again, like last year. I will always remember you holding my hand that day, as that was a day I realized that you were a kid with a very special unforgettable quality about you. I miss you, and hope you get to go home real soon!

PS: I don't blame you for wanting to smash down the hospital. :)

With MUCH MUCH love,
Aunt Kathy

Mrs. Copersmet said...

I am sure he looks adorable! He is such an amazing boy. As his 1 grade teacher I am thrilled to see he is looking to explore his whole head...He is such a Scientist! Please send him lots of hugs and well wishes from Patton. We all miss him:) You are such a wonderful inspiration to us all!