Pictures of our week!

This week has been hard..I'm not going to lie. The last 3 weeks have been hard on our family but pure torture on our sister bug. Watching her go through so much pain has been so hard for all of us to watch. Most of the time she just lays around starting into space. We are looking forward to better days. We are missing those Presley smiles. everything in my world feels better when I see my two children smiling.  The good news...we are 1/2 done with Delayed Intensification. To try to explain all the emotions involved would be too big of a task. Presley has been weak and not herself. The bags under her eyes are back, insomnia, roid rages, the food requests, blank stares, constipation and pain in her belly and legs. I know she's in pain and weak. Presley won't even talk to us. So hard. My heart is hurting. Crew has really been struggling. He cries and screams. We try hard to hold and love him and be so patient. It's hard to see young children suffer and not be able to explain what is frustrating to them. Crew at such a young age is experiencing hard emotions. All this stress is hard on our marriage. We are just in survival mode trying to get through the next day. Everyone is on edge. We are tired, wore out and tired from the lack of sleep. We are emotional. We talk everyday about needing to go on a vacation. We can't wait to just sit on the beach and do NOTHING, I hope that day is not far off. I can't wait for a day when cancer does not dictated our every move. I am always stressing about cleaning, giving proper attention to Crew, pill schedules, hospital visits, side effects, fevers, coughing, leg pains, and nausea. My head feels like it is going to blow. Most days is just feels like too much to bear. 

     We are thankful to be off steroids. I joked with Doc Fluchel last week talking about how he will never get away will making us take 29 days of steroids every again, like in induction. This part of DI sounded okay will 7 days on, 7 days off, and then 7 days on. That's only a total of 14 days compared to 29 days. Well I did the math and we got tricked again! They increased her dose of steroids so in reality she actually got more steroids this round. UGH. I'm thankful she is still walking and today was our last dose. Coming off the steroids Presley has been in a lot of pain and we have had to keep her on oxy round the clock. We are only 1/2 done with this intense phase but so thankful we have had no hospital stays, it could have been worse. My prayers were answered. I don't write any of this to have people feel sorry of us. I write because these are just the real emotions and trials we are facing. I also write for those mothers who are here for comfort and support as they walk this path too! We are halfway one with this intense phase. I hope we can all endure the next three weeks.

     My children need to know I/we have hope and we can endure hard things. I hope they will see these trials in my life and that I can be an example for them. Thanks for all the prayers and support.

Grandpa came to visit. They love when we have company!

   
                                 

We went to the Ducky Derby. This was Saturday.

Tired, weak, sick.

Presley got a book in the mail! She was so excited. Thanks so much Holley Clapp! You made her day. The only smile we got today. The timing was so perfect and much needed.

We are all tired...insomnia is a side effect of steroids.

We eat a lot of eggs! 3 or 4 times a day.

blank stare but hungry! Ice cream made her perk up a little

McDonald's chicken nuggets and fries. We even know which  local McDonald's are the cheapest.  yesterday we made 3 runs  to this place. 

I had to bribe to get the last dose done. This stuff has nasty side effects. 

Weak and hungry baby.