Monthly Archives: September 2015

September 15, 2015

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As most of you now know, Jesus and Mary called Ella’s name yesterday. Ella earned her beautiful angel wings at 12:33pm on September 14, 2015. We have comfort knowing that Ella is now Saint Ella and that we can pray for her intercession. Saint Ella, please watch over Joe, Malina, Jonah, Kit, and all of your friends not named here. Thank you, everyone, for your constant prayers and support. God bless!

Please continue to raise awareness for pediatric cancer. For those looking to make a difference, please consider supporting an organization that helps fund research or that helps families in treatment. For research, St. Baldricks is always a good one. They are the foundation that you see people shave their heads to help raise funds and awareness (www.stbaldricks.org). They help fund research for pediatric cancer. Closer to our hearts is the Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC). The consortium helps fund clinical trials that we hope will help give future pediatric tumor patients a life that Ella won’t. (nmtrc.org) Children’s Mercy Hospital is a member of the consortium. A foundation that is close to home and that has helped us as a family in a MAJOR way is the Supporting Kids Foundation. This organization strives to relieve the financial burden that KC families find when their child is diagnosed with cancer. We absolutely LOVE this organization! (www.supportingkids.org). Another is Bags of Fun Kansas City. They deliver personalized backpacks filled with toys and activities to kids fighting cancer. Ella is a proud recipient of one of these amazing bags! (www.bagsoffunkansascity.org)

Here are some fundraisers for Ella that are going on, including a couple in the Detroit area:

Please continue to keep our families in your prayers. We are overwhelmed by and are incredibly grateful for the outpouring of support from all of you. In lieu of gifts, please consider donating to Ella’s GoFundMe account here http://www.gofundme.com/c0tcr0.

September 8, 2015

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What a roller coaster of emotions. One minute we think that Ella’s time has come and then the next, she opens her eyes and talks. Ella had been unresponsive from about 3pm yesterday till this morning. This morning, she asked for apple juice and wanted to watch her favorite show (though she just listens with her eyes closed). Ella started to have seizure activity yesterday afternoon, so we have scheduled Ativan (a medicine to stop the seizures) around the clock. Ella’s port was accessed last night (faster delivery of meds in case of seizures) and she didn’t budge through the whole process (she hates being accessed). This is why we thought Ella was starting her process. We started her on a morphine drip in order to make sure that she is in no distress or pain. Ella seems to be at peace and is resting comfortably. Today is Mary’s birthday (the Mother of Jesus)!!! Ella has always had a connection to Mary and today feels very special and peaceful.

Please continue to raise awareness for pediatric cancer. For those looking to make a difference, please consider supporting an organization that helps fund research or that helps families in treatment. For research, St Baldricks is always a good one. They are the foundation that you see people shave their heads to help raise funds and awareness (www.stbaldricks.org). They help fund research for pediatric cancer. Closer to our hearts is the Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC). The consortium helps fund clinical trials that we hope will help give future pediatric tumor patients a life that Ella won’t. (nmtrc.org) Children’s Mercy Hospital is a member of the consortium. A foundation that is close to home and that has helped us as a family in a MAJOR way is the Supporting Kids Foundation. This organization strives to relieve the financial burden that KC families find when their child is diagnosed with cancer. We absolutely LOVE this organization! (www.supportingkids.org). Another is Bags of Fun Kansas City. They deliver personalized backpacks filled with toys and activities to kids fighting cancer. Ella is a proud recipient of one of these amazing bags! (www.bagsoffunkansascity.org)

Here are some fundraisers for Ella that are going on, including a couple in the Detroit area:

Please continue to keep Ella in your prayers. We pray for peace. We feel the love and support of everyone and we thank you so much! Thank you and God bless!

In lieu of gifts, please consider donating to Ella’s GoFundMe account herehttp://www.gofundme.com/c0tcr0

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September 4, 2015

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Tonight’s update from Joe:

What a day. Ella has been very sleepy and hasn’t moved from our bed. She has asked for her apple juice a few times and she’s kept it down! Ella hasn’t moved from the same position in bed, just moving her head from side to side. Her breathing is a bit irregular. She is responding some though! She will open her eyes spontaneously, especially with visitors. I’ve even gotten Ella to tell Sarah to “knock it off mamma!” That’s my daughter! Love it.

Our hospice nurse still thinks that Ella has days to weeks. Not much has changed since yesterday. We will continue to reassess day to day. We plan on keeping Ella at home until she starts to be more somnolent. Once she starts going really long periods without responding, we will move her to the KC Hospice House. Until then, she stays at home!

We’ve had a few visitors today including Grandpa Bob, Annalee, and Amanda Cole. Ella opened her eyes during each visit and that’s about it. We love that Ella’s friends Malina and Jenna came over. Ella was aware of them being here, but there wasn’t any interaction. We know that Ella loved it. Thank you all for coming and visiting!

Sarah and I have been absolutely touched and humbled by the generosity and love from our friends, family, and my coworkers. We owe everyone at Saint Lukes East, Saint Lukes Plaza, Saint Lukes North, Karmanos, and Henry Ford West Bloomfield a huge thank you. The support, prayers, and donations are a testament to the amazing people that I work (and worked) with (even those that I haven’t). Also, thank you to everyone that has donated to our GoFundMe. All moneys will go to end of life arrangements and also help with income lost by me staying home to be with Ella in her last days. We are brought to tears every day by the amazing people that have touched our lives. Thank you isn’t enough, but right now it’s all we have.

In lieu of gifts, please consider donating here http://www.gofundme.com/c0tcr0. We appreciate gifts, but Ella just will not benefit from most as she is not playful. Again, thank you thank you thank you. We absolutely are humbled, blessed, and appreciative of everyone’s generosity (prayers, thoughts, gifts, donations, etc). Please continue to pray for peace for Ella and our family. We love you all. God bless.

For those wondering about Make-A-Wish:

Sarah and I felt that Disney was not appropriate. We have talked to other parents that have been on that trip and it seemed too overwhelming for her. If Ella had a tough time with Frozen on Ice, pretty sure Disney would be hard too. We had decided to stay close and throw Ella an early birthday party. We were planning a ballerina birthday party that would take place at the Kansas City Ballet. It would be so cool for her. Due to Ella’s somnolence, we’ve decided to cancel everything. It doesn’t seem right to drag her out of bed for something she probably won’t stay awake for. It also seems that moving Ella too much makes her feel sick (more neuro symptoms). So, Make-A-Wish has been cancelled. Thank you everyone for supporting our decision in this.

Additional Fundraisers
Here are some additional fundraisers for Ella that are going on, including a couple in the Detroit area:

  • Stacy West Miller has organized a great fundraiser through Thirty-One gifts
    https://www.mythirtyone.com/…/shop/Party/EventDetail/8559472
  • Nicole Provencher has organized a fundraiser through the KEEP Collective. DesignElla inspired jewelry here https://www.keep-collective.com/soc/nu6ak
  • For all Detroit based folk, Nicole Lemmer Yoder has organized a fundraiser charity ride on October 3 at CycleBar in Royal Oak. Sign up here http://royaloak.cyclebar.com
  • Joseph Ritter has organized a charity tailgate to take place prior to the Michigan vs Michigan State football game on Saturday October 17th. It’s a $20 donation and covers food and nonalcoholic drinks. Stop by the tailgate at 2080 S State St in Ann Arbor on game day. Entertainment will be provided graciously by none other than Jerry Sprague! Thank you!
  • Debbie Ehemann is selling candy bars. Please message or facebook her the NUMBER of candy bars you would like to purchase.
  • Please remember that September is Childhood Cancer Awareness month and use every opportunity to raise awareness. Ella is a product of a lack of funding for pediatric cancer. Our children deserve more than 4% of research funding dollars!

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