Into Day Three...
Thank you all for praying! Ellie had another pretty good day yesterday. Again, towards evening she was hurting some. I think that's when the morning drugs start to wear off and the whole day catches up with her. It's a daily struggle to get Ellie to bed at a decent time (even at home) because of all of the things, medicine, etc... to get in her (plus once late nights happen a few times at the hospital or wherever, it's SO hard to turn that around again). So I've been trying to get her down earlier at home (successfully) and continued to try once we got back in the hospital, but it's just not been possibile on this visit. Last night it was late and she was tired and hurting... Pain control is such a tricky issue...at least for me. I tend to put a lot of thought into it before just giving her something right up front. I'm sure this must sound harsh, but it's really not. You see, in times like these I think that knowing your child really well is part of the equation. When pain and discomfort are manageable for her without drugs, Ellie can be easily distracted from the pain or sleep through it. When she's tired, she feels like it's unbearable...until she falls asleep. The last thing in the world that I want to do with Ellie is allow her to suffer, but I also do not wish to give her a drug for every discomfort. When Ellie was an infant I learned the skill of stepping back and thinking for a few minutes, even while she was screaming her head off and every instinct within me wanted to jump and just make the crying stop. I wish that I could say that I always did it right, but it was a learning experience that has continued to this day...and one that has paid huge dividends now. So far on this hospital trip Ellie has only needed the anti-nausea meds that are given just before the chemo each morning. At night Ellie has been able to put a heating pad on her tummy and fall asleep in five minutes...and then sleep WELL all night long. I love hearing her breathe and sleep so peacefully, knowing that it's under her own power and not drug-induced. And then wake up clear headed and strong. Don't get me wrong - there have been times that I was the first one at the nurse's station requesting a drug to bring Ellie relief... and when she needs the drugs, they really work! So when you pray for me, the biggest need that I have in the hospital is for wisdom...and calmness to step back and think and pray a little before deciding what to do...and then boldness to stand on that decision and words to explain it (often there's a nurse standing there ready to go get a drug if I would just nod in her direction). By nature I am not a bold person, and I have a hard time making the words come out properly in spontaneous situations. I do feel like God has undertaken for me many times in this area since September.
Yesterday I spent some time with a new family in the hospital. Their 7 year old daughter has been just diagnosed with Neuroblastoma, Stage IV. Watching them process all of the new information and try to get their feet under them just broke my heart. I remember so clearly how overwhelmed I felt when we moved to the oncology floor and I realized that this was kind of our new "home". I hope that I was able to give them enough tips to get them started and feel comfortable, but really, so much of this has to be figured out as you go...what's right and works for one child is not always the same for the next one. Including the new girl, there are four NB children in and out of this hospital these days. The other NB kids are: Carson (age 6 - diagnosed at the same time as Ellie, and currently on round 6); Irenie (a 4 year old girl, I believe on round 4) and Talia (age 7 - just starting round 1). If you would please pray for these little ones and their families also, I would so appreciate it. It has been good to be able to share information, and look out and see others just like us in the halls, but all of their symptoms and responses to things are SO different. This is the strangest disease...nothing is standard.
Thanks so much for your constant love and prayers for us. We feel so safe and peaceful, even in this hospital room, knowing that God Himself is surrounding us with His protection and love!