Evan's Second Bone Transplant

I'm putting the journal entry about Evan here instead of in the side column:

Day+1, 172 days here....................

This is Grandma Dorothy updating for Jaime. Many have been texting and calling for an update. The past 2 days have been a struggle. We have a new and hightened admiration for anyone who chooses to donate for a bone marrow transplant! Tuesday morning we all left Evan's room about 7:30 AM. Evan had his 2nd and final radiation treatment. The procedure is amazing. Dr. Firat, the radiation oncologist, was wonderful. Jaime had discovered a few days prior that he was Turkish, so they were sharing mideastern ancestory! He worked dilegently to ensure that Evan's blocks were perfect so that his body received radiation only where necessary. We discovered that he made yet additional adjustments after we left to get Jaime to interventional radiology for the placement of her Mahukar catheter. Where the boys have their central lines in their chests, Jaime had hers in the neck. She didn't appreciate the fact that I told her she was now like Herman Munster! Evan also told her that she was not allowed by him-the thought of a tube in her neck freaked him out. He pretty much held to that prediction! The insertion of the catheter was not completed as we had expected and was also more painful than anticipated.

After that procedure, she went up for lab and then to the Day Hospital for the cell collection. Joan was Jaime's collection nurse and we came to appreciate her wealth of knowledge and expertise. The entire unit was very supportive. We finally left there about 3 pm on Tuesday afternoon. Jaime was not feeling well-she was in pain and nauseated. The pain was both bone pain from the preparation for cell collection and the catheter in her neck. We checked on Evan, who was a champ all day. He did well in radiation-amazingly well, since he could not move at all. A custom mask was made and placed over his face for the procedure. The mask was also fastened to the the x-ray table in order to keep him still. Sounds barbaric, but done with love and care. He has his mask for a souvenier and really is proud of it. He doesn't like seeing the pictures of the procedure though. He had a lot of jaw pain after Monday's radiation, but Tuesday was pretty comfortable.

Jaime and I went down to the cafeteria for dinner and suddenly Jaime started bleeding-not much-thru her dressing. When I told her, she said she wasn't feeling well and was dizzy. We hurried up stairs and had one of the nurses check on her and we reviewed the discharge instructions. We did everything we were supposed to, but at the nurses' suggestion, we called the after hours number. Since we were at Children's, they suggested that we come over to the bone marrow transplant unit for a check. We got a wheelchair and flew thru the tunnels and restricted areas, guided by a housekeeper on a riding carpet cleaner to the unit!

We were met by Dr. H-although he didn't identify himself, but knew we were coming. We joked that Jaime could have been examined by another housekeeper! At any rate, both he and one of the nurses reassured us that all was well and we applied a new dressing and secured the catheter in a more comfortable position. Dr. Margolis called Jaime on Tuesday night, reporting a harvest of over 7 million cells. That was great news, but not knowing how many of those cells would be viable for transplant, it was decided that a second collection would be done on Wednesday.

Wednesday, we started over to Froedert by 8:15 AM, thinking the day would go much faster since it was only lab and collection. The collection itself takes about 3 hours, but has to be stopped whenever Jaime would experience side effects. Well, so much for plans-we didn't leave until almost 4 pm. Joan adjusted the collection differently now that she had an idea of how Jaime's system worked and it was more effective. But, the blood collected looked different. We were both anxious to ask why-not knowing if one day's collection was of better quality or greater quantity or what!

When we did ask, we discovered that Tuesday's collection had a lot of plasma in it and that Joan had to do a lot of adjusting to get the composition correct. Tuesday's collection was red-orange and more abudndant, while Wednesday's collection was a lower volume but much redder.

We found out today that yesterday's collection was even greater. Evan's total number of cells transplanted yesterday was 4.51 million and he should have about 3 million tonight. That's about 4 times more cells than he had during his first transplant. Jaime was a trooper and provided the greatest gift possible. While down in collection yesterday, Jaime had a storm of visitors. Dr. Margolis, his physician's assistant, Darci and Dr. Doug, the fellow came to make rounds! They checked on their star donor and provided an update on Evan as Jaime had missed morning rounds.

Not long after, Dr. Firat came over to see how she was feeling. All of the floor nurses have been checking on her to be sure she was comfortable and doing ok. After looking at Jaime (she did look miserable) and reviewing her labs, Dr. Margolis decided against a 3rd day of collection. That meant that Jaime could get the catheter removed from her neck. That procedure took an extra hour or so as pressure has to be applied to the insertion site to be sure she doesn't start to bleed. It went well and we came back to Evan's room just after 4 pm.

Evan received platelets and then his mom's cells about 8 pm. Once again, he slept thru the procedure! We took lots of pictures of Anna (aka Blondie-Evan loves her!) getting the tiny package of cells ready and watching them infuse. It's amazing how small the packet of cells is.

We tease Evan that we'll know the transplant works when he gets freckles and his hair grows back red! Evan woke up early today and was in a pretty good mood. He lost a tooth a few weeks ago and the socket started bleeding last night. Since he won't let us wash his mouth, he looks like he's part vampire. His mouth rinses don't remove the blood and we don't really want the clot that formed to be washed away. He also has complained of abdominal and ear pain today. Dr. Margolis has taken away his oral fluids again to ease his stomach discomfort. Both ears are full of wax, but nothing can be done about that for the time being. His mucositis is back. Good news-his chest CT is normal and the ultrasound of his spleen is without spots!! Either they were artifacts on the original reading or the infection has resolved. His temperature has been up and down and blood cultures have been taken. His blood pressure has been up today but he was extremely good about taking his medicine for that. He also had some platelets today. He's getting prepped now for his mother's second set of cells and as usual, is sleeping thru the process!!

This was chatty, but will hopefully give you a rundown of the events for the past few days. Hopefully the editor in chief will be back at the news desk tomorrow!!

Good night and God bless! Keep all donors in your prayers, because they give tremendously of themselves in order to give life to others.