Friday, October 29, 2010


This tiny little human is enduring suffering and pain that would demolish an adult. Please pray for her.

A miracle is too much to hope for at this time, but your prayers for less pain for Harper, and the strength for Amber and Ryan and their immediate families to get through this would be very much appreciated.

Harper's left eye has been affected by the cancer, and she can no longer close that eye.

Thursday Oct. 28, 2010
Written by harper's mother, amber:

It's been a rough week for Harper and all of us. Last friday night her pain began bothering her again. She was up most of the night tugging at her thigh and groin, only wanting to sleep in the floor. So that's where we've been every night since....crawling around the floor in pain. Her methadone and oxycodone doses have been increased multiple times yet barely provided minimal comfort. She is very good at distracting herself during the day, so each day we thought she may get better and be able to rest. Unfortunately this did not happen. Our hospice team and Childrens doc decided to put her on continuous morphine IV through her broviac. Our first pain med of choice was fentanyl but as luck would have it there is currently a nationwide shortage of it and we aren't able to get it for home care until Friday. The morphine drip was started yesterday at 8am at home, and by 3pm we realized were still going to have a tough time getting her pain controlled, so we were encouraged to take her Children's Hospital and get started on the Fentanyl. (Harper has had adverse reactions to morphine in the past as it makes her itchy, emotional, and very irritable so we didnt want to mess with it too much.)

We arrived yesterday around 5pm and were able to be directly admitted to ER yay! (thank you Angie!!!!) We thought the fentanyl was going to be the answer, but along with the chain of events this week, it proved to only make things worse for Harper. As her pain continued, we continued to increase her dose only to max out the meds she was able to have and give her a terrible fit of itchiness and extreme distraught. She was given a drug to relieve those feelings as well as a nice dose of Ativan to help her calm down, and then we were able to get a room to ourselves to work out the pain control for the rest of the night. (thank you Selah!)

I think it was around 12-1am that we decided to start her on an-another narcotic- and begin the process again of figuring out the appropriate dose to ease her pain. At 2am she went in to respiratory distress due to the amount of narcotics and various drugs given to ease the pain and calm her. She was given yet another med to reverse the effects of the narcotics and bring her out of the distress. After what seemed like a very long time, she began breathing normally on her own and we were back to square one. The Dilantin was started once again and she seemed to get an hour or so rest in before she was ready for a bolus and an increase dose. That is the process for the early am......wake up in pain, get bolus, wait, another bolus, wait, increase dose, etc. Thanks to our AMAZING night nurse, Megan, for doing what you do so well! We are so blessed and fortunate to have such a caring staff on 9W that love and care for Harper.

We also had day 3 of radiation on her eye at 8am this morning. She is always sedated for this which made things a little scary given all of the narcotics and Ativan she was given. As usual, Harper came out like a champ and is now sleeping comfortably on Ryan's chest:) We plan to hang out here until we have a full nights rest with little to no pain.

Things are becoming more and more real each day of what exactly is happening to our baby. Her eye is huge, her pain is intense, and she is very exhausted ( as are we!). I can't even begin to explain the new insurmountable, extreme sadness we feel. Being back on 9W is bittersweet, a place of hope for us for so long and now a place of comfort as we most likely will not return (unless we have more pain issues). Many new children are on the floor yet a few of our old friends remain. When does it stop? Such a vicious cycle from one child to the next all rotating in and out of treatment.

Please, get out your A-game and pray that Harper's pain is controlled very soon and she is able to go and rest and enjoy her time once again! Pray that Ryan and I find a way to hang on by a thread and somehow get through this. Pray that our families do the same.

Thank you for any prayers you can offer up to God for this sweet little girl and her family. Anna Marie

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