Day 45 - Reminder of Options

Sorry that I have not updated in awhile.  It has been busy, or there has been nothing to report.  Garrity flew in Wednesday morning to come spend her spring break with us.  We were all very excited to see her.  Yesterday, Lindsey and Sierra had IV infusions.  They went in at the same time at 8 am.  Lindsey's infusion was 4 hours and Sierra's was 15 1/2 hours.  It was a very LOOONNNNGGG day for Sierra.  Garrity stayed at the RMH with Gage and helped with picking the kids up.  That way I could stay with Sierra and Lindsey.  Sierra and I returned home to the RMH at 11:30 last night.  This was her last IVIG infusion before her biopsy next week.  They will be checking to see if all of these treatments have been working.  This is probably not her last IVIG ever, but it is the last one of her treatments we have scheduled for now.  Lindsey's tests for IVIG came back negative, so she no longer has to receive IVIG.  She is really sad about that (not!).

A few thoughts I wanted to write mostly for Jason and I's sake, to remember. When we first came to the RMH almost a year ago, there was a family here.   As our time here has continued, I have had some brief conversations with her.  Finding out, that they are here because they have a little boy that has a very rare incurable disease.  He was born with it, and has been in and out of the hospital his whole life.  His admissions were becoming more and more frequent. Since his admission here, he has not been out and his trips to the PICU are more and more frequent.  Often, I would see him at school with Lindsey.  I sat and realized what a day here is like for her. With two small girls, she tries to help give them normalcy to life outside of the hospital, torn trying to be there for her son as well, and a husband attending school so he can provide for his family. (I can relate, to the children part).  The difference between her and our situation, is we have options, we can receive a transplant.  For them, there are no options.  Today I saw her in the hall when I dropped Lindsey off at school. For months they have been hoping to get him out of the hospital and take him home. They were told yesterday that their son would not be leaving the hospital.  As she was telling me this, she broke down.  I hugged her and told her I was so sorry, suddendly I had all the time in the world to sit and listen to her.  She has been on my mind ALL day today.  I get teary just thinking about their situation. In May it will be a year and a half that they have been here.  Fighting every day for their sons life.  Her husband, while visiting with him one day, talked about their son (his "little buddy") always coming to help his dad work on cars.  I realized he was a nice and soft hearted guy.  I may get frustrated at times, with having to run the kids here or there.  BUT, at least I still have 5 kids to run here and there.  My heart aches for this amazing family.  They are the heroes and their son who held on against all odds.  Who knows how long they have left with him, but hopefully they can be memorable and positive.  What an amazing lesson this family has taught me.

As Jason and I were talking about my visit with this mother.  We realized how important we as parents are for our children.  When Sierra was preparing her talk for Sunday, I asked her if she ever prayed for help to be strong when facing her medical challenges.  She said, honestly, "No."  I asked her then, how she faces challenging situations like when she was told about her rejection.  She said, "Well, I just lean on you and dad.  You and dad get me through it."  Just like this family mentioned above, they've done everything to help lift up and support their son.  It is important for Jason and I to make sure that we stay healthy and strong so that we can be there to help lift up and support our children.  Just like he and I look to our Father in Heaven to lift us and and give us support.