Deep Breath

Last Thursday we spent the day getting check ups for Erica. She is still doing really well and the reports on the GVHD are the same; it is a chronic form of GVHD and there will be various ways to deal with it through the years. Some forms of treatment just aren't available to Erica given her size.

Last Thursday was also the day that Sammie had to go into the hospital for an infection. Her family had hoped to keep her home, with no further hospital time, but it was absolutely necessary to go in. We were able to see her in the Infusion Room. Erica recognized Sammie right away and gave her a big smile. I was able to give Chris, Sammie's mom, a big hug. We also brought a goodie-bag for their stay in the hospital. I saw something that day that had only ever been described to me and that is the sight of a mother's strength. Usually it is only felt, but on Thursday I saw it with my own eyes. People told me that I had done this . . . and they are right I did . . . but I never knew what it looked like. There was Chris, she looked beautiful, well put together, lip stick and all, she smiled, she was gracious, and then there was that "holding it all together" badge of honor. My goodness, how I wanted to just let her melt into my arms . . . but that can't happen because this strength is too powerful and her daughter is trusting that strength to pull her through. Chris knows that there will be a time and a place where it is safe and don't get me wrong, I saw it in Dad too. People told me that there were times when they saw me like this and the truth is, we (the moms) know it, but what do you want us to do . . . there is work to be done, care to be given, doctors to talk to, bags to pack, medication to be given, . . . this is not a good time to come unglued. That is what people see, this type of strength, this way of being is intentional, 100% on purpose. And that is ok.

I spent some time tonight visiting cancer kid's websites. If you ever want to get some perspective, do that. Here I was, just back from a neighbor's home, feeling like I was punched in the gut as I watched twin two year olds run, jump, talk, sing, yell, at about 15 inches above Erica. It's no big deal, I just don't like it, always explaining to people who go, "oh my goodness she is so cute, how old is she?" I say, "two and a half." And then I watch their faces, hmmm, "she is so little." I think, "no shit." They feel like they need to say more, "was she a preemie?" So what do I do here? Sometimes I say, "No" and just leave it at that. Sometimes I say, "the cancer really affected her growth." It's ok, I know, she's little. That is her nickname, "Little" but what will this mean for her life or will this growth hormone kick into high gear pretty soon. She'll catch up, she'll talk soon, that is what they say. But for now, sometimes it just sucks to see my child being "the baby" as she plays with other two year olds. Back to the other kid's cancer websites . . . I regained perspective; Erica is alive, she is not on chemo anymore, she is growing, she is thriving and we are blessed.

I smile, I haven't really had a blog like this in awhile. I don't really know how many people read it anymore . . . I guess it is kind of nice to fall of people's radar, it means things are good. So, do me a favor and read Sammie's blog and pray for her and for her family. My heart is heavy.

God Bless.

House Call

Usually, when I am running I write a blog post in my head. Oh how I wish I could just hit "send" and have my words appear on the screen. There are so many stories and updates to Erica's life right now . . . she taking full advantage of being TWO. Yes, we have attitude and "time-outs" often but happy to be living a "normal" life.

The good Dr. Taylor made a house call about a week ago. He jokingly said that "for every 999 trips that a family makes to UCDMD, the doctor will make one house call!" Ahh, finally! It was great, Erica was showing off for him the whole time, as if to say, "look at what I can do, thanks to all of your care and knowledge and experience and patience and hard work." And let me tell you, he was impressed!

Not so impressed, however, with the GVHD on her little hands. And so we got another boost in medication. She doesn't seem too bothered. We discussed things like long term effects of steriods and how the GVHD will play out. It is still a matter of time and close attention to any changes in the wrong direction.

There are other updates from the speech and phyisical therapy corner which I will post soon.

Overall, things are going well. We just pray for Erica's continued health.

Always on my mind right now is Sammie and her family. My heart is heavy with what Sammie and her family are giong through. Please add them to your prayer list!

In faith.

Freedom

Erica now walks up to people and lifts her shirt up . . . (watch out Mardi Gras), she is very proud to be tubie-free.

We are doing well, day to day, happy to be giving baths without the normal Broviac care and the growth hormone shots are going fairly well. The day that she had her Broviac taken out, we also collected all of the binkies in the house and bagged them up for the little babies "who really needed them" (wink, wink). She was such a sport; she was introduced to a 3 month old on the 7th floor and then bravely handed over the bag. It was a sight to behold. Since then, we don't get many requests for the binkie but when we do we just reminder her that the "little, little babies" have the binkies and she just thinks that is so funny.

So we turn the page and find ourselves at the beginning of a new chapter. This chapter has less definition than the ones that preceded it, it is not based on a protocol or scheduled event, it is somewhat left to interpretation. I am reminded of the "choose your own adventure books" that I loved as a kid. I want this period of time to be about freedom for Erica and for our family. I don't really want to have a heart attack every time I even hear someone sneeze and I don't want to explain, anymore, why my baby has no hair or is so small. I guess I just don't want to be defined by Erica's cancer . . . and at the same time, I am so proud to call her a cancer survivor. My vision~freedom for Erica to play in grass and freely approach other children, to start preschool in the fall and have her 3rd birthday outdoors. And (for the benefit of Bob and all healthcare providers), this does not mean that she kisses the kid who sneezes or even thinks about walking outside without a sunscreen dip!

I love this little girl, she does talk much but she says it ALL. She is still as spirited as ever and that is why I know that she will embrace this new found freedom, in fact, she will lead the way.

I read Erica's blog from the beginning the other day, and yes, I sobbed. But objectively, I asked, did I honor her and our family through this journal of sorts? Did I thank the people that I wanted to thank? Was I fully honest and true to Erica's story? You know, as much as this is for everyone to keep up to date, it is for Erica. So I think I have done well, I know I have been honest, painfully so. But I saw a couple of "gaps" so stay tuned.

Love to you all and many prayers for Sammie and her family~God is with you!
Megan