The party must go on.

Aspen spent the last two weeks of March in and out of the hospital. Her first stint lasted three-days, having spiked a fever causing an automatic admission. While Aspen did test positive for norovirus and rhinovirus, there was no detectable source of the fever. After two nights and no growth on the blood culture, Aspen was discharged Thursday morning, albeit slightly neutropenic, but with antibiotics to help. The doctors said they’d do everything possible to ensure Aspen could safely leave, and Elliott’s 5th birthday party could go on.

Given Aspen’s neutropenic state, she abstained from the the party, instead staying home with Boma, i.e. Ashley’s mom. Even with Aspen’s absence, Elliott’s party was still a big step for us. During the darkest days of relapse we would talk about his party, at his request. The party would be the first larger gathering we’ve had with friends in two years. Elliott was steadfast on what he wanted: lazer tag, despite having never played.

Elliott’s week of Birthday fun

The first hour and fifty minutes of the party were fantastic; many games of lazer tag, pizza, cake, and games. With ten minutes to go until the end, Ashley’s mom called her because Aspen spiked a fever. Fevers can mean many things, including the cancer growing and other infections. Ashley got a ride home and brought Aspen to the ER, Boma in tow.

After waiting in the ER for six hours, the decision, we all knew was coming, was made to admit Aspen. All tests ruled out cancer, and she continued to test positive for rhinovirus. Before going to the floor, Ashley switched out with Troy. That Sunday started a week long process of Troy sleeping at the hospital, Ashley coming in the morning, Troy leaving to work, Boma relieving Ashley for a bit, and Troy going back at night.

Waiting in the ER for a room

The second hospital stay ended up being 5-nights, 6-days. During that time Aspen’s ANC bottomed out, i.e. no immune system, for three straight days, so she was on prophylactic antibiotics right up until discharge, for nearly a week afterwards. The hospital stay was boring and exhausting, which is exactly what we want it to be. Elliott continued to go to school and skating lessons, while some family members took Elliott out while not in school. Hospital stays truly take a team to pull off. We are forever grateful to those who are here, jumping in without hesitation.

To make things more interesting, Ashley has two herniated disc in her back. With a lot of physical therapy, steroids, and anti-inflammatories, the decision has been made that Ashley will need surgery. The outpatient procedure will take place Tuesday, April 12th and we are hoping for a swift recovery. Given Ashley’s pain, she can’t pick up Aspen, or even have the slightest pressure on her back/leg, let alone sleep in a hospital. worst thing she can do is pick up heavy objects and sleep on a hospital bed.

Aspen came home, Friday, April 1st and on Sunday April 3rd, Troy, some of his co-workers, and many of our friends, competed in the Amazing Wish Race to to raise funds for Children’s Wishes. This year’s race was dedicated to Aspen. Proceeds from the race and donations raised go towards funding programming at Children’s Wishes, including wish trips like Aspen’s. On May 2nd we’re heading to Florida to spend a week at Disney. We’ll be staying at Give Kids the World and exploring all of the Disney parks, plus Legoland and Universal Studios. Elliott is so excited, he has no clue how much fun he is about to have! Up until now he didn’t know DisneyWorld existed and that the Magic Kingdom at the beginning of Disney movies was real.

What’s up NEXT?

April 13-15th Aspen has chemotherapy (Decitabine) at the Tomorrow Fund Clinic, the infusion lasts about 1.5 hours. She is hooked up through her central line and usually sleeps or plays the whole time.

April 22nd Aspen is confirmed to receive lymphocyte infusions from her donor. The cells will be fresh, having been donated the previous day, whereas all others will be from frozen cells. Our hope is that Aspen can achieve chronic GVHD through the lymphocyte infusions which will turn create leukemia attacking cells. Ultimately, giving Aspen a chronic disease she will need to manage for the rest of her life, that can range from issues with her eyes, lungs, GI and so on. But ultimately she will be alive and it can be managed.

May 10th Is our tentative date for Aspen to get a biopsy to see if the DLI and chemo is still keeping the disease away.

After we get these results we will come to a fork in the road, if it’s negative do we head to a Haplo transplant (Ashley or Troy are the donor)? Or, do we continue and try to get GVL through DLI, which has never been done before?

Fundraising

We want to spread the word about Project Stella. Advancing research is the only way we will move the needle to find a cure. This project is the reason Aspen is alive today, there are advances being made because the funds go DIRECTLY to the research. If anyone has ideas on how to lobby to donors or fundraising efforts, all ideas are welcome. We will continue to write letters, share our story and spread the message as wide and far as we can.

We created this image while in the hospital last week. Please feel free to share on your social media pages. The only way we can fight this disease is with a collective effort to fund research.

One response to “The party must go on.”

  1. That photo with Boma says a lot. Strong family! We love you so much and thinking of all that is in store these next couple of months.

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