Herald and Journal, Oct. 22, 2001

Leukemia makes for a rough road

By Ryan Gueningsman

In September 1997 when two-year-old Angela Volness got a viral infection, like many kids her age do, no one could have even imagined what it would be the beginning of.

Her parents, Paul and Laura Volness of Winsted, took her to the doctor and had it treated. Doctors said there was a possibility of it being leukemia. However, the infection went away, and a week later she was back home a healthy little girl again.

That following January 23, Angela was taken back to the hospital ­ she had become sick again. This time the diagnosis was much worse than a viral infection. Doctors told Paul and Laura something no parent wants to hear ­ that their daughter had Type ALL Leukemia.

There are two types of leukemia that can occur during childhood; ALL (acute lymphocytic leukemia) and AML (acute myeloid leukemia). AML is considered the worse of the two.

"We went through two years and two months of chemotherapy, and doctors announced she was free of it.

She went through a year and a month free of it, but on March 26 of this year, she got an ear infection and we brought her back in," said Paul. "She had just been in the month before for her one-year checkup and her blood counts and everything were perfect. The ear infection hit her counts, and she relapsed.

"The next step was radiation and chemotherapy, and they told us she'd have to have a bone marrow transplant," said Paul.

Since the Volnesses found out that Angie would have to have a bone marrow transplant, they have maintained a web site through www.CaringBridge.com, a site that provides cancer patients a place to update their families, friends, and communities about their progress. Laura has updated the site with Angie's progress since March 27, the day following Angie's relapse. Below are excerpts from Angie's web site updates, as written by her mother Laura.

**********************

Tuesday, March 27, 2001

Yesterday it was confirmed that Angie had relapsed from her treatment for leukemia. She was off of chemo for one year.

Now her treatment plan includes more aggressive forms of chemotherapy, radiation, and a bone marrow transplant. Hopefully her brothers, Jake and Josh, or her twin sister, Bailey, will be a match for her. That is our hope right now.

She is a tough little girl, and she remembers the last time she had to go through this treatment. Needless to say, she is not happy to be back.

Sunday, April 1

Angie finally came home today and she is so happy!

She is looking and feeling pretty good. I know she understands some of what is going on, but I don't think she fully does.

On Tuesday, Jake, Bailey, and Josh, will be getting their blood taken to see if at least one of them is a bone marrow match to Angie.

It will be about a week before we find out the results of that test. Today we are just happy to have her home.

Thursday, April 12

On Tuesday, Angie had another bone marrow test because she still had leukemia cells in her bone marrow last week, and they were decreasing, but not as fast as the doctors thought they would.

The results showed that the cancer cells are decreasing (slowing), and her bone marrow is making normal cells too, which is a good sign, but she is still not in remission.

It is not uncommon for her not to be in remission yet and her doctors are hopeful that she will be by the end of this month.

Wednesday, April 18

Today we got the best news that we have received in the past few weeks . . . Jake is a perfect match for Angie. We have waited for three weeks to hear some good news and this was it! Angie had her last round of chemo yesterday and her counts are still very, very low, but that is to be expected.

In order for the transplant to work they have to kill all the cancer cells, and in doing so, they also destroy the healthy cells, so for about two weeks she will have no immune system.

But after getting her counts Tuesday, and seeing that they are almost at zero now and she is still so full of energy has made me feel a little better about the transplant. As long as she keeps on smiling I can too.

Angie still has a long road ahead of her, but I am more confident every day that she is going to be healthy again. The next two weeks are going to be a little easier on Angie, and for now we are just enjoying the good news!

Wednesday, May 9

Monday we went to the University of Minnesota to talk to one of the doctors there and to get an idea of when the transplant will take place.

We received a lot of information in a short amount of time, but the doctor that we saw was very helpful in understanding the whole transplant process.

The way the transplant works is that she will have one week as an outpatient where she will have a lot of different tests done to make sure she is ready for the transplant, and Jake will also have some tests done.

Then, the following week, she will be admitted to the hospital where she will have chemotherapy and radiation. The following week she will have the transplant.

The transplant itself is like a blood transfusion, once the marrow is taken from Jake in the morning it is processed a little bit and then she would get it through her IV later in the day.

One thing that I know will be hard for Angie is that once she has the transplant she cannot leave her room for four to six weeks. Once her counts start to get to the normal range, she will be discharged to the Ronald McDonald House, two blocks away from the hospital.

They have to follow her for 100 days after the transplant so the day after she receives the transplant is day one and then we count from that day.

Tuesday, June 5

On Monday, Angie had a clinic appointment and her counts are up. We thought that would mean that she would be headed to the university but it turns out that they cannot take her until July 2.

So, the week of July 2 is her work-up week, when they will do blood tests and test all her major organs (heart, liver, etc.) to make sure they are all functioning normally. The following week she will be admitted to the hospital for chemo and radiation and the week after that she will have the transplant.

That puts the transplant roughly around July 16, about a month later than we had originally planned. So, the 100 days that she will be gone start the day after the transplant and continue from there which will put the 100th day around the end of October.

The good thing is she has a month to enjoy the summer a little more. The bad thing is it puts everything else a month later, too. The waiting is really turning out to be the hardest thing to do. The more time I have to think about this the more I dread doing it.

When I think about things like that I just feel so bad for not only me, but for Jake, Bailey, and Josh. I know Angie is going through more than her share right now, but I can only imagine what they must be feeling too.

Friday, June 29

Angie starts the first day of her "work-up" Monday July 2. Right now her schedule is a clinic appointment at 8 a.m., and at 12:30 p.m., a LP (Lumbar Puncture where they check the spinal fluid) and a bone marrow test. That whole procedure will take about two hours total, so she does have a long day Monday.

She knows that when she has a bone marrow test and they give her the "sleeping medicine" to put her to sleep; and that when she wakes up, we will be waiting for her and she knows that she can't do certain things when her counts are low.

I really have to give her credit for being such a "mature" five-year- old. She has gone through more in these past three years than most of us will in a lifetime, and she never complains about it.

In a way I am glad we had this extra month to enjoy the summer. We have done a lot of things with the kids that we haven't done before and they are really having a good time. I just hope and pray that this transplant will be the cure for her leukemia, and that she has a long and happy life.

Tuesday, July 17, Transplant Day

Today was transplant day and everything went as planned.

Jake came to the hospital at about 6:30 a.m. He was scheduled to donate at 8 a.m., and by noon he was back up in Angie's room. He did such a great job. I am sure he was nervous, but he was so brave.

I don't think he will fully realize the gift he has given Angie until many years down the road. I am so proud of both him and Angie. For such young people they have been put into a very major "grown-up" situation and they do what is asked of them without complaining.

Angie received her transplant at about 1:30 p.m. and it was over around 2:30 p.m.

Everything was done right in her room, (Paul, myself, and the kids were all there). The nurses brought the little bag containing Jake's marrow in it and hooked it up to Angie's catheter, and that was it, just like a blood transfusion. (Jake and Angie also have the same blood type, so there was very little processing that they had to do with the marrow.)

It seems like there should be more to it than that, but actually things went pretty smoothly. Angie was given Benadryl beforehand so she slept through most of it, but when she got up it was back to playing games with Bailey, Josh, and Jake.

She has been feeling pretty good. She does have a few mouth sores, but they haven't bothered her so far. The next couple of weeks could be rather rough for her. Each child responds differently, so we'll have to wait and see what happens.

Having Paul and the other kids up here for the past four days has really been good therapy for her. She gets so excited to see them. I just wanted to take the time tonight to let everyone know that everything went good today and Angie is doing great.

She is by no means out of the woods yet, but she is strong, and I think she is going to do just fine. I don't think she really understood why people were making such a fuss over her today but years from now I think she will.

Tuesday, Aug. 7

Today is day 21 and Angie's counts continue to rise. Angie had a bone marrow biopsy done today.

We won't have the results from that for a few days but what they hope to see are Jake's DNA in the marrow and not Angie's; and certainly not any leukemia cells, and to see if engraftment has taken place.

She is starting to make her own platelets (for blood clotting) so that is good.

She will have to wear a mask at all times, unless she is in the house, or a vehicle, until at least day +100. After one year, she will have to get all her vaccinations again. And, even though she has already had the chicken pox, she could get them again since she has a whole new immune system.

It's kind of scary, all the things you have to watch for and all the precautions you have to take, but I was scared about the whole transplant process and it really hasn't been that bad.

We finally got a room at the Ronald McDonald House today. Paul and the kids have been staying at a motel because they have been full since we got here. So, after she is discharged, we will be over there until they let us go home.

We are planning on the other kids staying up here with me and Angie until school starts, so that will hopefully make the days a little brighter for all of us. We have been told that if she is doing well by day 60 (about the middle of September) she might be able to go home then.

Friday, Aug. 10

Angie's biopsy results showed 100 percent donor cells meaning it is all Jake's cells and none of Angie's, which is what we were hoping for. Angie and Bailey are twins, but now Angie and Jake have matching DNA.

Monday, Aug. 13

Angie left the hospital yesterday morning, and now we are at the Ronald McDonald House. What a relief to finally get out of that little room! Today is day 27 and Angie had her first clinic appointment. Her counts are rising quite nicely right now.

Sunday, Aug. 19

The kids are having fun at the Ronald McDonald House. Last Wednesday we played Bingo, and Bailey won twice right away so she was pretty excited.

Today we celebrated Angie and Bailey's sixth birthday. (Their birthday isn't until Wednesday, but Paul might not be able to be up here, so we celebrated it early). Angie says they get to have three parties, one today, one Wednesday, and one when she gets home. I'm sure they'll expect presents for all three parties!

This week a nurse at the clinic asked Jake if he would talk to this other little boy who was donating his marrow to his younger brother. So we met them on Friday, and it turns out that they are from Watertown. It was nice to talk to someone who is from our area.

I think everyone that we have met up here so far have been from out of state with the exception of one or two. Jake, by the way, was a little too bashful to say much.

He's a good kid and he is a big help to me up here and I want him to know that his good deed will never be forgotten. Actually, when we introduce him to other people we always tell them he was Angie's donor, and his face lights up so much, he is so proud.

Saturday, Aug. 25

Today is day 39. Yesterday Angie had a clinic appointment, and they said since her counts were good, she could come home until her next appointment, which is next Tuesday, so Paul came up after work yesterday and brought us home.

As long as Angie's counts are good she only has to go to the clinic twice a week, then it will be down to once a week, and then every other week, etc.

Monday, Oct. 1

Good news Angie finally came home today! Today is day 76. It has been a long, long two weeks.

What happened was Monday, Sept. 17, Angie came down stairs at about 3 in the morning, and Paul thought she felt kind of warm, so we took her temperature and it was 100.5, which is the breaking point for calling the doctor.

So I called the on call doctor and he said to watch her for an hour and see what happens since she hasn't had any problems with fevers before. So, we gave her some Tylenol and her fever went down. The rest of the day she seemed her fine, usual self.

The following day, Tuesday, Sept. 18, she came down again at about 2 a.m. and her temperature was 101.3, so again I called the doctor. Since she had an appointment that morning he said it would be okay to wait until then.

At her appointment she was obviously not feeling too well, and the doctor said she wanted to keep her for about three days, to give her IV antibiotics. So we waited for the hospital to get a room ready for her and we waited, and waited. Finally six hours later they had a room.

The rest of Wednesday, all day Thursday, and Friday, she had normal temperatures. I know the University is known around the country for having the best doctors, but I have to say I am not happy with the way things went this past week.

I especially feel bad because there was nothing I could do to make Angie feel better. I feel so bad when I think about everything she had to go through this last week.

She was so brave though. But there were days when she just wanted to get home and she would cry because she just didn't want to be there and I knew exactly what she was feeling then. One of the nurses kept telling me this was "just a little bump in the road," but I feel like it was a big pothole! I'm sorry if I sound angry, it was just so very unexpected, and it really caught us off-guard.

But, the past is the past and she is doing okay now, and I expect she will only be getting stronger and stronger now that she is home.

************************

Since the last journal entry, Angie is still at home full of energy. Her siblings are back in school, and Bailey brings Angie's homework home for her so she can keep up. Her first grade teacher, Marnie Ebensperger, also stops by once a week to make sure everything is going well with her school work.

Laura continues to update their web site, www.CaringBridge.com/mn/angelavolness, about every week. She really is thankful, first of all, for the people at www.CaringBridge.com for their help, and just the idea to do this. She also expresses her thanks to all the family members, friends, and community members who have left positive messages for Angie to look at.

Benefit breakfast

There will be a benefit breakfast Sunday, Oct. 28 from 9 a.m. to 1 p.m. in the Holy Trinity High School cafeteria, with a free-will offering being asked.

The menu includes pancakes, scrambled eggs, ham, fruit, coffee, milk, and juice. A silent auction, craft, and bake sale will also be conducted with the benefit.

Donations and well-wishes can be sent to:

Angie Volness Fund

c/o Barb Fasching

PO Box 1062

Winsted, MN 55395


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