Wednesday, May 4, 2011

I love being home again, and most of all Skyler loves being home again!  I have my happy little boy back and its been wonderful.  His med schedule, however, has been anything but wonderful.  Every 4 hours day and night I have to hook him up to an IV med.  That means no sleep for mom, but just one look at that happy little face and its all worth it.  I would gladly do this schedule for the rest of my life if that means my son gets to be home and is happy.  Those 2 1/2 weeks in the hospital were rough but I am very grateful for the lesson I learned there.  I learned that no matter how hard I try I cant keep every little germ away.  I did everything in my power these last three months to keep Skyler from getting sick, but he still managed to get sick.  So I told myself when we got home we were going to have fun.  No matter how hard this would be for me I was going to get him back out in the world and enjoy life.  And thats exactly what we have been doing.  Yesterday we went to "Acorn Park"  thats what he calls this park where there are acorns he likes to collect.  This is his favorite park, and instead of playing on the playground he would much rather see how many acorns he can find.  This was the first thing he wanted to do, have a picnic at acorn park.  So we got some lunch and headed over there.  He loved it and we found some good acorns.  It made my heart happy to see him happy and have fun.  Im so glad its starting to get warm now so we can do this more often.  Today he wanted to get a churro from Costco.  This made me so nervous even thinking about bringing him in a store,  but I asked several docs and other cancer moms and they said it was fine as long as he wore a mask.  So today he went in his first store in 8 months.  I was a nervous wreck, but again just seeing the look on his face made it all ok.  Bringing him out in public was really weird for me, Im not used to all the stares yet.  At the hospital you dont get that because everyone is used to seeing bald kids with masks around, but out in the real world its different.  People dont see little bald kids that often, I know I didnt before cancer became apart of my life.  Everyone we passed stared at him and had that "oh how sad" look.  Im just glad Skyler really isnt old enough to realize that he stands out in a crowd. 

Ever since being home it feels like a little weight has been lifted off my shoulders.  Im so grateful for the lesson I learned during our stay, and I know all the prayers said on our behalf have been answered.  Skyler hasnt had a fever since being home.  A true miracle if you ask me.  I pray now that they stay away and that the CT scan on Friday shows the nodules have shrunk.  I also pray that we can now continue on in treating his cancer without anymore bumps in the road.  Normally with his type of Leukemia you should hit the maintenance phase around the 6th month.  This is where they stay for the remainder of the three years of treatment.  They say you can start living a more normal life in this phase.  For Skyler he wont hit maintenance until over a year since diagnosis.  This isnt how we planned for it but just even getting to maintenance now is a huge deal and Im so grateful for how far he has come.





We also stopped and got some ice cream on the way home...yummy


This is a sight you see very often at our house


15 comments:

Lacy Allred said...

you are such a lovely mommy. i bet skyler will LOVE his new freedom.

Anonymous said...

I am so happy Skyler is doing better and free to explore the world a bit. It's hard to have people stare at your child. My children don't have cancer, but as a baby my son had to wear a helmet because of a medical condition and now wears hearing aids. He's going to be getting glasses soon as well. So, while I can't imagine the cancer stress, I do know how the pity stares feel as well as dumb comments and questions. I just try to remember that they mean well and before my little guy came along I probably did the same thing.

You are such a good mother and an angel on earth. It's obvious by the love and care you unselfishly give to your son. And I must say, you are so beautiful. The stress does not show in your appearance at all, which is amazing to me. Sorry, I know that is superficial of me to think about, but I'm always struck by what a pretty mommy you are.

My prayers continue to be with you and especially Skyler!

Ashleigh said...

I am so happy that Skyler is home and he's happy. That really is the best thing for him. Just do your best to keep germs away and enjoy living life too. It's a hard balance but you have always done what's right for him and he will be protected by Heavenly Father. And I agree with everyone else, you are so beautiful. I think you are just an amazing person. Because of you, I am now donating blood every couple of months. It's no longer a fear but a privilege. Thank you for sharing your journey so we can all learn from you and Skyler.

Lindsey Hill said...

Yipee!!! Does this mean Emma can play with sky sometime??? We LOVE the park!!! Emma asks everyday if skyler is better now so she can play with him! Text me if you want to go to the park sometime this week or whenever your scheldule will allow! Love you guys!!! Keep up the great work!

lea said...

So happy to see him happy, and hear that you are happy. You both have earned a little of that! (a LOT of that!)

Erin Smith said...

Crystal you are truly an inspiration and I have learned so much from you! Wow... What a gift just in time for Mother's Day. You are amazing!

cjmom said...

Happy Day! So great you are home. I hadn't realized how scary it must be to fight off all the world's germs. You are a wise woman to learn from this instead of being crushed by it. Prayers always!

Erin said...

It's so wonderful to see such huge smiles on Skyler's face! Being home really is the best thing for both of you. Good for you, for pushing things and getting home.

Maintenance really is a time when life becomes more normal. We hope things continue as planned now and Skyler can be in maintenance before winter so he can continue to enjoy the world.

And Nolan loves Skyler's Mario pj's. I think those 2 would have a lot to talk about.

Erin & Nolan

Anonymous said...

Crystal,, oh what wonderful news today,,, so glad that you are home and that smile is back on his beautiful face. Mother's day will be extra special now. You are doing a great job, and skyler you are the bravest little boy in the world. stay strong, god bless

zachs mom

tenacious d said...

I love seeing his happy face without tubes or a mask. What a miracle!

Anonymous said...

I am so happy that he hasn't had a fever since you came home, what a miracle boy. I an glad that some ot the stress has lifted off of your shoulders. He looks so happy to be at the park.

susi and adam said...

Wonderful news!!! Happy Mother's day Crystal :)

lindsay Roscoe said...

It makes me smile to hear that despite how hard it was to be there, that you brought home something good. LIFE!! HOPE!!
We LOVE you guys and PRAY for you daily. Skyler is still included in EVERY prayer that EVERYone of our kids says. They truly Love him! You are an amazing woman Crystal!

Anonymous said...

Happy Mother's Day! I'm so glad you guys are home and that Skyler is fever free! I think about you and pray for you and Skyler every day. Thank you for sharing your lives!

Oh also good for you and Skyler to get out. It's so hard to not be afraid of all the germs and especially with how sick he has been. It's also hard to see all the stares, whispers and pitting looks. Jacob notices every once and awhile and I just tell him that's because he's special and they haven't seen a kid with a mask on. He thinks that's silly. I wish we all could see the world through their eyes...

Many prayers that Skyler continues to stay well and you all stay home.

Katie, mom to Jacob (5 yrs old) dx 7.28.2010 pre-B ALL

Kristen's mom said...

Acorn Park looks like the place to be. So glad you are home. Many miracles and lessons are learned up at that hospital.