Love for Lena

$64,278 of $50,000 goal

Raised by 1,144 people in 3 months
Created November 10, 2017

Just a few short weeks ago, Evangeline (Lena) Tietjen, 4, was playing dress up, painting, coloring, and running around with her twin brother Clark. When Lena began throwing up and was lethargic, everyone was convinced that this was your typical stomach virus and that she would soon return to her normal self. When her symptoms did not improve, her parents (Erin and Matthew Tietjen) took Lena to the doctor, who recommended a follow-up with Neurological. That appointment was not to be, as Lena began having difficulty with her right arm and leg.

After a visit to the local hospital, she was transferred to CHOP where a CT Scan showed a mass on the Thalamus of her brain. Lena stayed in the ICU for five days and underwent a biopsy and a procedure to drain the fluid and swelling in the brain, and to determine the type of tumor and course of treatment. Our family was sure that we would receive positive news and that we would soon be undergoing surgery for this tumor.


Our worst fears came true on November 7, when the pathology reports came back. My sister (Erin) and her husband (Matt) were called into a room with a group of doctors to discuss the biopsy results.

Lena has been diagnosed with a Grade 3 Anaplastic Astrocytoma; an inoperable malignant tumor. This news is devastating and the family is in shock. From what we understand, surgery is not available due to the location and type of tumor. Without any treatment the doctors predict that she will have three months to live. With the multiple treatments beginning in a few weeks, the doctors are hopeful she can live for a year. We will fight this prognosis EVERY. SINGLE. DAY.

Our family is beyond devastated right now.  Our immediate concern is for Lena to receive the treatment she needs to continue to fight and survive, and for her parents to have the ability to support Lena and her twin brother Clark through this nightmare.


We are in no way giving up hope for Lena as Erin and Matt are seeking integrated therapies, have additional opinions from hospitals at the forefront of brain cancer research, and looking at the new advancements for this type of brain cancer. CHOP is a phenomenal hospital and we will continue to fight this battle for Lena, who is so very strong. New information is learned each day and we know that there is hope.

This GoFundMe account is in response to everyone who would like to help support Lena and her family during what will be the battle of their lives. While the family does have excellent insurance and we are so thankful, there will be financial needs in the future. This account is an attempt to ease the burden of taking off of work for an extended period, traveling daily to CHOP for treatments and therapy, seeking additional treatments and resources not covered by traditional medical insurance, and for other related expenses: gas, tolls, travel (if necessary for other treatments), paying bills and all of the other expenses of life that do not stop when your child is ill.

These funds will help Erin and Matt focus on spending time with Lena and her twin brother Clark; time that is so precious at this point. All money raised will go directly to Erin and Matthew Teitjen to support Lena and Clark. 

We are praying for a miracle and miracles do happen. Our family is strong and we will rally together to fight this battle for Lena. Your donation can support Erin and Matt's ability to focus on Lena during this most difficult time.

Thank you for taking the time to read this story, and I hope you will consider making a donation, however small, to help support my niece and her family. I will continue to update this page with current information on Lena's battle.
 

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Since it has been a while this post is in two parts - first an update on Lena's Library, and then an update on Lena since she has been home from CHOP.

Update 1 (Lena's Library):
Lena, her brother Clark, Erin and Matt have been so deeply touched by the generosity of the community - friends, family, and coworkers, who have offered their time, their money, and their prayers to support them through this ordeal. Many have donated to support the Tietjen family financially, some have started prayer chains that reach across the country, some (twin moms of Orlando) took time out of their day, every day, to deliver MUCH needed coffee and anything else Erin and Matt needed at Arnold Palmer. The Love for Lena basket auction was a great success thanks to the Vineland Preschool Program. SJMOMS have sent meals, collected donations, bought Christmas gifts, decorated the Tietjen house with holiday lights, and even sent Santa with the Vineland Fire Department to make a pre-Christmas stop. Lena and Clark even got to ride on a fire truck with Santa! Individuals, businesses, and Erin and Matt's employers have all supported Lena and her battle.

But the most amazing and astonishing thing is the outpouring of public love and support through Lena's Library. Their hearts (and home) are filled with books and gifts from strangers who were touched by Lena's story. Over the course of the past month, thousands of books have been delivered. At this point, Lena has more books than she could have ever hoped for. Check out the attached pictures!

Update 2: (Lena's progress)
Lena has had two very eventful weeks. She completed a new proton simulation to adapt to her new post-surgery scan. For the second time, Lena was a champion and actually came out of the procedure singing and dancing!

She was approved for day hospital, which meant she didn't have to stay in-patient for rehabilitation, so her parents have dedicated themselves to traveling daily to her new "school" at CHOP, where she undergoes three hours of PT/OT and now speech therapy every day. She is making amazing strides and working hard to regain the ability to walk, use her arm, and improve her speech, but she has a long road ahead of her with daily, intensive therapy.

Luckily, Lena was released from CHOP on December 18th, just in time to spend Christmas at home with her family. Her Orlando neurosurgeon, Dr. Elbabaa, even called on Christmas Eve to say hello. Everyone feels so blessed to be given this Christmas miracle!


Only 1/2 of the total books donated!
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Lena is back in the Northeast!! CHOP was able to send a medical transport and our little fighter is back at CHOP! She is progressing well following her surgery and although there is a long road ahead, she is doing so much better than before surgery. Thank you everyone for your continued prayers and support!! Also, if you messaged me about an undeliverable book for Lena’s Library, it appears there was a problem with the original wish list, that has since been fixed. Thank you!!! #lenathelion #loveforlena #lenaslibrary.
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To all the GoFundMe supporters of Love for Lena. I haven’t updated for a while and I know everyone cares and wants to know what is going on with Lena. I tried to copy and paste my sister’s post but it was not to be. Here is a latest update in my less eloquent words with hopes that your thoughts prayers and support will pull us through this most difficult time. I apologize if you have reached out to me with no response, as we do appreciate every kind gesture, we just are overwhelmed at the moment.

Lena is in Orlando at the ICU of Arnold Palmer Hospital for Children. The report from the genetics testing showed a mutation that effectively changed the tumor classification and subsequently the prognosis. This also changes her options for treatments. As soon as her parents were working to wrap their heads around this new information, Lena needed emergency surgery to drain the fluid in Lena’s brain. At this time we learned that the tumor has doubled in size in just a few short weeks. Yesterday she had another surgery to put in a shunt to support draining of fluid. The surgery was a success but we also learned the tumor is pressing on the midbrain, which controls consciousness and eyelid movement so in her current condition she is sleeping most of the time and is unable to open her eyes.
Today the doctors told us that it is unlikely that she will improve without intervention. She also isn’t stable enough to come back to CHOP at this time or for any treatments. Lena went into surgery today at 3:15pm. This surgery is now an option due to the change in size and location, and the surgery to debulk the tumor can potentially improve her current condition. What the surgery cannot do is eliminate the tumor, which is an angry aggressive beast.

Right now we are asking for healing prayers for Lena. We are optimistic that this surgery can get us time, quality time, to spend with Lena, and that she is stable enough to come home and start treatment.

Erin and Matt wanted me to relay their gratefulness for everyone who has supported our family and shared the positive thoughts for Lena. If there is any positive that has come from this nightmare of a situation, it is knowing that there is kindness, compassion, and empathy in this world. While we knew we had a wonderful and extraordinary group of family and friends, the kindness and generosity of strangers will stay with us and we will be forever grateful
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Later today we will gather around our family table giving thanks and showing our gratitude. I cannot express in words how amazing everyone’s support for Lena has been. In less than two weeks, this GoFundMe has grown with almost 3k shares and hundreds of donations, many from strangers. I am thankful that our family, during this most difficult time, can see that they are surrounded by love and positivity. Lena will celebrate Thanksgiving with our family today and be surrounded by love. I am grateful that she is home, I am grateful that we are together, and I am grateful that so many people are thinking of her and our family today. Happy Thanksgiving!!
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$64,278 of $50,000 goal

Raised by 1,144 people in 3 months
Created November 10, 2017
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