MINNEAPOLIS, Minn. — One day at a time.
That’s how Lindsay Monnier, of Minster, is handling life after her son, Eli, 2, received a bone marrow transplant at Children’s Hospital in Minneapolis earlier this spring. Monday is day 44 since the transplant.
Eli was born with recessive dystrophic epidermolysis bullosa (EB). His body is missing the collagen VII protein, which is needed to keep the connective tissues together. He was born with two different mutations in the collagen VII gene.
The disease causes the skin to be extra fragile, like butterfly wings, and can be damaged easily and takes longer to heal. Scaring also occurs when the skin as the skin heals.
“It’s been one complication after another,” said Monnier during a phone interview of their lives since the transplant. “He flew through chemotherapy.”
She said no one could tell he was receiving chemo because his energy level was so high. That continued through the treatment until the day after the transplant, which he received from his dad, Alex Monnier.
“The day after the transplant, everything fell apart,” said Monnier. “He reacted to something and they don’t know if it was the cells he received, the chemo or the medication. He got a rash all over his entire body and was extremely red.
“When this happened, I was alone with Eli as Alex had gone back to Ohio,” she said.
A steroid topical cream was prescribed for Eli, she said, and the rash finally went away.
Going though chemo, she said, reduced his white blood cell count to zero, “which is what it had to be to rebuild his new bone marrow,” she said. “He was in a lot of pain after the transplant. So they gave him pain meds, which increased his pain. He has always reacted badly to all pain meds.”
Because of the EB, Eli is bandaged over all his body, except his head. Bandage changes which used to take one to two hours were taking up to five hours to complete.
“When they took him off his pain meds, this improved,” said Monnier.
He also developed an intolerance for his G-tube feeds so they began IV feeds, she said.
“He was on a different formula on the G-tube feeds,” said Monnier. “His stomach was already inflamed from the chemo and the PediaSure made him sick and he would vomit. Then he got a blood blister on his esophagus.
“He was vomiting blood for five days,” she said.
During this time, Eli had a platelet transfusion to help get his blood count up.
“They didn’t tell me whether it was normal or abnormal to vomit the way he did,” said Monnier. “They didn’t tell me if it was normal to have the food intolerance. His reaction to the pain medication was something they (doctors) haven’t seen before.
“I had told them to take him off the meds,” she said. “He gets a dose of Tylenol everyday and there’s a night and day difference in him.”
The doctors are now focused on whether the new bone marrow cells are engrafting in Eli’s body. Lab work was drawn to see results on the CD33 and CD3 process. Results usually take three days to get, but his first lab work took one week, she said.
“The CD33 was at 95 percent,” said Monnier. “This means the engrafting is creating white cells, red cells, hemoglobin, and platelets. This means that most of the cells in his body are donor cells.”
The results of the CD3 weren’t as encouraging.
“The results showed 0 percent,” said Monner. “This means there are no donor cells. This test looks at the cells that store memories for the body and provides immunities to viruses.”
Those results were from more than a week ago, she said. Additional labs have been drawn to retest the results.
“He’s at risk for a graft rejection,” said Monnier. “The next day, the doctor said that might not necessarily be the case, so they redrew the labs.
“We got those results yesterday (Wednesday),” she said. “The CD33 results were at 83 percent this week. The CD3 results didn’t come back yet.”
Since the CD33 numbers are going down, she said, there’s a chance that Eli’s body is trying to reject the donor cells.
After the interview Wednesday, Monnier posted later that night that the CD3 results had finally come back. His CD3 cells were a 4 percent and Eli’s antibodies against his dad’s are still negative. Monnier explained on her post that Eli’s body is still trying to figure out if he wants to keep the new bone marrow or not.
Monnier said Eli will be receiving bone marrow cell boosts from his day at day 60 after the transplant and at days 100, 120 and 180. The cells were harvested from his dad and saved after the initial transplant.
“They may be giving him his first cell boost 13 days early,” she said.
Monnier said the CD33 results, which are at 83 percent, are the cells which go to Eli’s skin and helps repair them when they are damaged.
“The hospital has 40 cases with this transplant,” she said. “Four kids have had to have a second transplant and it was more successful.”
And while the results of this transplant are still being received, the Monniers have made a decision about Eli’s future.
“Alex and I are thinking that if it (transplant) doesn’t work the first time, then we won’t do it a second time. It’s just too much for Eli to handle.
“There’s a lot more gene trials that will be coming along in the next five years so we’ll look at those,” she said. “We just want to get back to our life the way it was before the transplant.
“Even if he has a 100 percent engraftment, he will still have EB,” she said. “We’re hoping this will just give him more days with no blisters.”
Monnier said even with the transplant, Eli is still experiencing blisters. One day he had five of them.
“We’re in a wait and see game,” she said. “We’re still staying hopeful but we are looking at the future if it doesn’t work and there won’t be a second transplant.”
Monnier said she and Eli have good days and not so good days.
“Today (Wednesday) was a great day,” said Monnier. “He work up in a great mood. He was the child he was before the transplant. He was laughing.
“Some days i’ts hard to get him motivated and out of bed,” she said. “If he’s in a bad mood, I can’t get anything done.”
Monnier said she has received a lot of family support since they went to Minnesota in March.
“Most of the people in our families have come here,” said Monnier. “Alex is able to be here every other weekend. My in-laws will be here tomorrow (Thursday, May 17). My sister and niece and my other sister have visited.”
After the transplant, Eli had to stay in the hospital until doctors cleared him to be released. Since then, he and his mom have been staying at Towne Place Suites and visiting the outpatient clinic on a regular basis.
“We have a different routine here,” said Monnier “If I was home,I’d have the ability to do things differently. There are days when I don’t get to eat. There’s no shower for me and I’m exhausted. And Eli is shouting and hitting me because he doesn’t want his bandages changed.
“Last weekend, Alex was here and on Saturday I left them alone for three hours,” she said. “Eli was horrible when I got back. He wanted nothing to do with Alex.”
Monnier will get a mini-break this weekend when she comes back to Ohio for her niece and nephew’s graduation.
“Alex will come here and be Eli’s caretaker for three days,” said Monnier. “It’s going to be hard to be away from him, but it will also be good for us.”
Monnier said the neighborhood they are living in is “great.”
“It’s beautiful here,” said Monnier. “There are walking trails and there are friendly people. There’s always someone who stops and talks to us. Today Eli got to pet a dog. It was licking him and he just laughed.
“The management at the hotel is bending over backward to help us,” she said.
Cards for Eli should be sent to Towne Place Suites, Eli Monnier, Room 121, 525 N. Second St., Minneapolis, MN 55401.
“But please,” said Monnier, “no more toys for this child. He has so many toys now. He demands things like a typical two-year-old and then doesn’t play with them.”
The Monniers are halfway through their stay in Minneapolis.
“I have a friend coming in the middle of June,” she said. “Alex will be here twice in June. My parents will be here in June too.
“We’ve been here for two months, so we have two more months to go,” she said. “We’re here for a minimum of 100 days post transplant, so that’s the middle of July.”
And on the days that Monnier feels the need for some help on the days that get to rough to handle on her own, she turns to God for help.
“We have faith and hope,” said Monnier. “God knows what he’s doing. I might have a bad day, but it’s just one bad day. Then the next day will be OK.
“I just have to put my big girl panties on and take care of my son,” she said.
Reach the writer at 937-538-4822.