Bone marrow transplant patient, 10, improving slowly

It’s been almost three months since 10-yLily and momear-old Lilly Vanden Bosch of Dorr under went a bone marrow transplant at Helen DeVos Children’s Hospital in Grand Rapids, and her health challenges continue, but she has made some progress.

Lilly was diagnosed more than two years ago with aplastic anemia, a rare blood disease that can be life threatening. She had a recurrence, which prompted the transplant.

The daughter of Tom and Meg Vanden Bosch, she has been in the hospital and faced a long period of isolation in her battle against a disease in which doctors say her immune system is attacking her bone marrow cells.

Other treatments were attempted after she was diagnosed, but there was no match found for her in her family two years ago. Because the disease came back, a global search was conducted and a woman in Europe was identified.

Dr. Beth Kurt, an oncologist and pediatric hematologist at DeVos Children’s Hospital, headed the search after determining a bone marrow transplant was the best option.

Her mother posted on Facebook today, “How many 10-year-olds ask sincere questions like, ‘Am I going to pass way during the night?’… Since making the decision to go to transplant this past August, I’d have to say that the past two weeks have probably been the most traumatic for our little patient.

“In that time frame she’s experienced tremendous pain and high fevers, has had a tonsillectomy and adenoidectomy, multiple PET scans and ultrasounds, a CT scan, eight additional days of inpatient care, and she’s lost 10 pounds in the process.

“It’s only over the last few days that she has finally started turning the corner toward feeling better and getting her appetite back, but she is exhausted from the battle with two-hour naps and ten-hour nights becoming a common occurrence.

“The good news is that, as far as her viral loading blood tests are concerned, Epstein Barr and HHV-6 are no longer detectable while CMV and Parvo continue to decline. Hopefully over the next few weeks we can nail the lid shut on these menaces once and for all!

“Setting all of that aside, she somehow continues to show gradual progress in her transplant recovery, with more time in between infusions and a reduction in the amount of oral medicines she has to take.”

Meg Vanden Bosch said there are simply too many variables that can and have thrown a wrench into her progress with barely more than a moment’s notice.

“I keep telling God that this a lot to endure, that I’m not sure how much more we can take, and that the magnitude of the transplant process is overwhelming, but then I’m reminded that many of you have fought or are fighting your own individual battles as well.

“So today my prayer is that you will find the strength to stand firm and be refined through the process! If it helps, take some encouragement from Lilly’s recent art project, if she can do it, so can we!”

PHOTO: Lilly Vanden Bosch hams it up for a picture with her mother, Meg.

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