Please pray for our friend, Mara...

I have a link from my blog to the Adams family. If any of you could take the time, their story is amazing. Please remember this little girl in your prayers, as they are such a wonderful family, and have handled this trama in their lives with such dignity and grace. I have copied an entry from Heather who is Mara's mom, she is so eloquent in her words,

Struggles- July 20, 2008
It’s 2:30 a.m. and the thought of writing this post is keeping me awake so I decided to just take care of it now rather than lay awake thinking about it any longer.

We got home last night from another quick trip over the mountain to be with family for Kirsten and Dallas’ reception in Ephrata. While we were able to do a lot of fun things together (see Wall-E, go to the reception, go to the water park), it was a difficult weekend for Mara and for mom (probably others too). On the bright side, Katrina is feeling much better after a short bout with a fever on Friday. We are grateful that she is back to normal again. We need her spunk to keep us laughing.

Through our posts and the sounds of things, I’m starting to realize that many of you have been given the impression that things are just fine for Mara. While we are grateful for the fact that her tumor has remained measurably “stable” that description does not match up with her current status right now. My sister Michelle and I talk frequently, sometimes several times a week and despite our conversations and my descriptions of how Mara’s doing, Michelle was shocked to see Mara these past few weeks. So it’s with a very heavy heart that I try to inform you of her status right now, not wanting anyone to have the wrong impression of how things really are. Over the course of the past few weeks, several friends and loved ones have teared up at the sight of Mara. Sometimes I think in my head that I’m blowing things out of proportion and that I’m just being sensitive to the difficulty at hand. But when others respond this way, I know that it’s not just me. What’s happening is as unpleasant as it is undeniable.

The difficulty with DIPG is that its not a traditional tumor and cannot be thought of in the same way you would any other tumor. Normally, you think of a tumor as a mass or a “blob” occupying space. This is not the case in Mara’s situation. One idea that we’ve heard is that if the healthy brain tissues are thought of as blades of grass, Mara’s cancer is tiny grains of sand infiltrated in the grass. Another idea is that if the brainstem is thought of as jello, the cancer is pepper flakes sprinkled about occupying space but without a central core. There is no part of her brainstem (or pons) that is not peppered or sandy hence the diffuse, intrinsic, pontine description. From what we currently understand, it could be that while Mara’s tumor has not made the brainstem enlarge further, the grains of sand are becoming more concentrated and impeding her function.

Mara’s ablility to get around is becoming much more difficult. While we have been holding her hand for some time to help her maintain balance (since December), now it is an absolute requirement. She has taken many falls the last few weeks in particular and cannot be left standing for even a short time. She’s asking us to carry her a lot of the time. Because of this, we are thinking a chair will be in order soon. It’s not that she cannot walk because she still can with some degree of difficulty but her balance is very off. The logistics of a chair are challenging for our family. I will need to be able to push Mara and somehow contain a less-than-2-year-old Katrina at times, not to mention coralling Max and Natalie. We are hoping there is a solution to this family dynamic. Using our double stroller for this lanky, floppy Mara is becoming less of an option as this is what we’ve been using thus far. We meet later this week (Thursday) with a disablility services company that will come to her regular physical therapy session. This is something that we probably could have addressed a while ago but we’ve been putting it off hoping that we could make due and that things would improve. This is not an easy step for us to take.

Mara’s ablility to talk has gone downhill these past few weeks. The drooling she experienced at the beginning of her diagnosis is back and limiting her articulation of words. There’s a lot of “what” and “huhs” going on as we try to understand her and what she needs. Bryan and I can usually pick out what she’s trying to say but it’s hard for others who don’t hear her talk as often. Her voice is also softer, making it even harder to hear her.

If you see Mara, she’ll probably look tired even when she’s not. Many parents have described this “drunken” look to us and it seems an accurate portrayal. Her eyes don’t focus as quickly and her responses are much slower. She is needing to nap everyday, something she fights and does not give in to easily. A few naps a day would probably help her but she doesn’t like that idea very much. She doesn’t want to miss anything.

Eating and swallowing continue to be a challenge, although at her last appointment, her pallate was still lifting nicely which is good. Swallowing is a mechanism controlled by the brain stem. Mara’s meals take about an hour to complete usually and it’s a struggle to get her to eat at most every meal. This has been the case since March and we have somehow gotten used to this although we’ve never enjoyed it very much. Her weight is less than at diagnosis but has maintained recently so we’ll continue our push to get her to eat as best we can as long as it’s still safe for her.

Perhaps the most diffiuclt factor is that Mara’s emotions are very touch-and-go lately. She will have great stretches when she’s comfortable but there’s also a lot of discomfort that she faces. Not being able to tell us exactly what’s wrong makes the situation even more frustrating. Often we don’t know what she wants and she has a hard time telling us what she needs and it ends up sounding as if she’s whining- a lot. Usually, it’s just little things that bother (her brace isn’t on right, her hair’s in her face, the tag on her shirt itches, she wants to be moved to another room) her but by the time we figure out what it is, it ends up being a big deal. She doesn’t seem to have the reasoning or logic to deal with her emotions. This plays heavily on our emotions as we do try our best to make her happy.

So what are we going to do now? Well, Mara’s team at Children’s has made it clear that we can do an MRI as often as we feel we need one. However, we feel we need to give this chemo some time to tell if it’s working or not. Even though it seems like it’s not, we’ve thought since December that things have been growing only to find out that there’s nothing measurable. She did have a one month break in chemo because of her port surgery-maybe that’s a factor in all of this? Since we would not change our course (yet) we don’t feel like putting her through another MRI right now is the best solution. We’ll probably do one more treatment (next Monday the 28th), then scan a few weeks later (August 11). If there’s measurable growth, we will consider something new. With clinical trials, there has to be measurable growth and so Mara hasn’t qualified for anything yet. This is frustrating in many ways although we feel we’ve been lead to the best chemo choice right now which has been off-trial.

Life is difficult lately but we are getting by, recognizing that it could get worse before it gets better. I think that Heavenly Father made Bryan the way he is to specifically deal with this situation. Because of his rock-solid nature, he is carrying all of us. Though he doesn’t think so, often he is able to calm me down when I am struggling. It would be a sad home indeed if Bryan and I were alike in our emotional regard. I’m not saying he’s void of feeling or coldhearted, he just doesn’t cry as much as I do (thank goodness). And though I have difficult waves during the days sometimes, I’m usually pretty composed until the kids go to bed and I can unwind. Though I don’t enjoy feeling sad, I am grateful that our kids go to bed early still and that I have this down time. We are fragile but stable.

Despite the many advances in cancer over the last decade, DIPG has yet to have any breakthroughs for the past 30 years. We are fighting a terrible monster that no family should have to deal with. We feel blessed in that we’ve been given the tools to cope- sometimes we just have to figure out how to use the tools. We continue to be amazed as arms of love are outstretched towards us. We have incredible parents, siblings and the best friends. Thank you for caring about us all. We continue to ask for your prayers even though you may be tired of praying for the Adams. And while you’re at it, could you please pray for Max, Natalie and Katrina? In our attempts to care for Mara, these kids are stuck fending for themselves much more than we’d like them to. Mara is so blessed to have these three siblings. We are learning more everyday about their roles in our home. How we need each other!