Sunday - June 22nd

There has been a change in plans for Mathias' care. We will be getting the remainder of his intense treatment at the University of Minnesota Children's Hospital - Fairview. That facility was rated as one of the top pediatric oncology facilities in the US and they were able to take Mathias on as a patient with just a day's notice. I chose to go there for the critical/intense portion of Mathias' treatment and we will transition back to Sanford once Mathias makes it to 'maintenance'.

We went to Minneapolis last weekend and started Mathias' newest round of chemo with the U of M. I met with a nurse practitioner, a social worker, a fellow, and his oncologist. Everyone was awesome and spent a lot of time with me explaining everything. They were wonderful and I was very impressed. I am confident I made the right decision.

Mathias' newest chemo phase started on Monday and will last through August 10th. Mathias received a dose of chemo in his port that day and then he started some new oral chemo as well. Monday was difficult because I had to give Mathias 8 pills crushed up at one time. He was a real trooper because he had to take it in three bites and I thought he might throw up after each bite, but he kept it all down. We also had to give him the steroid again for a five day course. Thankfully we just finished the steroid for a while. Mathias was very irritable on the steroid and he had some odd food preferences. For days all he wanted to eat was bacon or tacos. I have been told that some of the chemo gives them a metalic taste in their mouth, so it is not unusual for him to crave foods with stronger tastes.

On August 11th we will need to travel to Minneapolis and remain there for six weeks due to the intensive nature of the treatement he will receive at that time. That phase is called 'delayed intensification' and it can be pretty hard on the body. Some of the drugs can knock his immune system to almost nonexistent and other drugs may cause his bladder to bleed. For this reason he may need to be hospitalized for a portion of the phase. Hopefully not, but he will need to remain very close to the facility for those reasons.

During this six week phase I am hoping to stay at the Ronald McDonald House that is only two blocks away from the clinic and hospital. We visited there this past week and it was really amazing. Mathias loved it and didn't want to leave. I am hoping that those six weeks pass quickly, because it will be really hard to be isolated during such a critical time. But I have quite a bit of time to prepare for that.

Mathias Benefit

There will be a benefit held for Mathias Saturday, June 21st. It will be held in Harrisburg at the Junior High School from 3:00-7:00pm. The benefit will consist of a children's carnival with inflatables, games, baloons, and prizes. There will be some nice items/prizes raffled off at the carnival. For the adults, there will be a poker tournament after the carnival. It will held at the Sports Zone in Harrisburg. The grand prize is a 32" LCD Flat Screen TV. All proceeds will assist with the medical costs associated with Mathias' treatment.

The carnival is being organized by a highschool classmate of mine and his wife. For more information, feel free to contact Tom Abbott at 605-413-5497 or Katy Abbott at 605-254-7100 or e-mail to letshelpmathias@yahoo.com

Sunday - June 8th

Mathias has been feeling pretty good. His appetite has really gone down. Today he barely ate, but he drinks a lot. I think he is slowly shrinking back down to his normal self. All in all though, he has been doing better than he was before. He makes me smile everyday with the things he says and does. He is changing and talking so much more. Today is my birthday and he sang "Happy birthday to Mommy" which made my day. His new favorite expression is "rock on" with his thumb up. He likes to tell me "I don't think so" when I ask him to do something he doesn't want to do. Mathias still has his hair, but you can definitely tell it's thinning. I'm hoping he keeps it, but I know he'll be adorable either way.

We found out that Mathias will no longer be able to be treated by the Pediatric Oncologist we were seeing. He is retiring and now the hospital where we have been receiving treatment will no longer have a pediatric oncology program. I have been in a bind over the last couple of weeks, trying to figure out what Mathias and I are going to do. We would either need to switch to the other hospital here in Sioux Falls, or travel to another city with a hospital with a bigger oncology program. Unfortunately I don't have the resources to travel to another city for the extended time I would need to, so my only viable option is to go to the other hospital here in Sioux Falls.

I am not happy about having to change our enitire routine that we had established and I feel like we are starting all over with this whole thing. I knew the staff in the clinic and all the nurses on the pediatric unit, knew where everything was, I had a certain comfort level, but now that's all gone and we start over. I did go and meet one of the pediatric oncologists at the other hospital and I liked him. He did acknowledge that they do not take care of a high volume of patients with ALL...I think he said they have treated around 6 this year. Although this low volume doesn't help ease my anxiety about being treated at a facility that doesn't see a lot of this, the physician did assure me that he felt very confident that they were capable of caring for Mathias. He also has treated patients that have had the enzyme deficiency that Mathias has. I have decided that since I don't have a choice, I'm going to just try and be positive and make the best of the situation.

One other thing that stinks about this is that I have been getting an employee discount for Mathias' hospitalizations to date. Unfortunately since we are having to change to the other hospital, I will no longer be eligable for the employee discount. I swear, when it rains, it pours.