Patricia Stone , Matthew Stone, and Anna Stine

00:03 My name is Pat Stone. I am 59 years old today is July 27th, 2013. We are at dornbeckers Children's Hospital and I am Mom to my son Matthew and my daughter Anna.

00:27 Play Mafia age 18.

00:32 Today match

00:37 July 27th 2013

00:46 Doernbecher's

00:51 And your mice my son and my brother brother.

01:03 My name is Anna Stine. I am age 22 days date is July 27th, 2013. What dornbeckers children's hospital and I am daughter and sister.

01:22 So Matthew, why are we here today?

01:25 Want to talk about you having?

01:31 What were you sick a while ago a long time ago?

01:34 Yes, I'm sick, and I'm going to the hospital very sick.

01:44 At home. I'm not feel like it it feel sleepy all the time. So

01:56 Evan Casa. Hey Mercy

02:01 I'm going to say if he lied.

02:07 Anna come back to

02:09 Has Federer

02:14 Today because you were sick.

02:18 Find a half ice.

02:21 Su casa

02:26 After you had leukemia, how old were you Matthew?

02:31 I am too when you got sick. How old were you?

02:36 S10

02:43 I am 18. I'm an adult.

02:49 That was a pretty remarkable time for you Matthew when you were so you were sick, but you couldn't tell us that you were sick because you have Down syndrome. So you just kind of laid around all summer. You just were having a good day just being lazy and that's okay. You can be lazy in the summer and then and then one day you woke up and you wouldn't walk you wouldn't get out of bed. And you said your legs hurt and we had to take you into the emergency room, and they said well.

03:22 I don't know. He's not got a fever and he's not bleeding. So just go home and see if you can take care of them and

03:30 Then we had to take you in to see your doctors and they did lots of tests and

03:36 Blood work and they said you know what? I think you might have leukemia and they had them to tell us to come up here to Doernbecher.

03:46 It was quite a shock.

03:48 Quite a shock. We rushed up here as a family and

03:52 They did more tests and sure enough they came in and said you had leukemia and that we had to start chemotherapy.

04:01 But you remember any of that?

04:05 Yeah.

04:10 Were you sick for a long time or for a little time out time?

04:17 How are you now?

04:19 I'm back. Now. Are you better I do better. I'm tough. I'm kid. I do it. That's why.

04:30 Were you Brave or scared when you have cancer?

04:41 I remember that day. I remember when the doctor said that you were sick.

04:52 I remember that I came home and Jim came home and we were packing and you were going like why.

05:00 Aren't you ready to go and

05:04 And Jim said we had to get up to Doernbecher.

05:13 Dad came home and

05:17 You were still.

05:19 At the doctor's with Matthew and they said that we had to get to Portland to Doernbecher Children Hospital as soon as possible, but I didn't know that so dad comes home and is in a rush to get packed and leave and I assumed he was leaving for a forest fire because it was summer and that's what he does in the summer. So I offered to help but he looks at me and he goes are you ready to go? And I said, what do you mean and he said are you ready to go? And I said no. I'm not going anywhere and he said Matthew has cancer we have to go to Doernbecher as soon as possible get your stuff and let's leave.

06:02 And you was done, but I heard I was complete shock and I just kind of turned around and walked away and didn't really say a word and he realized that I didn't know and we both began to cry and he apologized for.

06:25 The shock and that point it was a little late. So we packed our bags and hit the road.

06:36 Along Road. It was for our drive to get here. We got here about 9:30 that night and the next morning. They came in and did a the first bone biopsy for Matthew and

06:48 They said why we're doing the bone biopsy. We're going to go ahead and start his chemo since we really think he has a key Mia and that's like chemo. I never thought about the fact that he'd have to go through chemo.

07:00 I mean I had kind of guessed that this was leukemia before the doctors had told us and then just hearing the words chemo was at this took my breath away.

07:12 And that started the long journey.

07:16 Forgetting you healthy

07:18 They came back late that next that day. It was we waited forever. It seemed like forever all day waiting for the final results and they came in and said that you had pre b-cell leukemia.

07:31 And because you were aged 10, they put you in the high-risk category for a cure.

07:39 Do you know?

07:41 That just seemed another double whammy to be at a high risk, and then they explain that with your down syndrom. There isn't a separate protocol for all the medications you were going to have to take so they wanted you to be part of a research project.

08:01 And what did we say? Yes to that Matthew.

08:04 I'ma say yes. Yep.

08:10 Research is important research has helped you help everybody before you and now you've been able to help everybody. That's come after you and remember there was one drug that was really going to be hard on you because you have Down syndrome and dr. Stork said, you know.

08:30 I don't want him to go through this one the way it's designed because of the side effects. So we're going to wait and see if they'll let us change it for you and and you did really really good that time. And so now she said everybody gets treated the same way you got treated because you did so well.

08:49 So everybody before you help them know that it was a rough treatment and then you were the one to kind of turntables with research to help everyone have better treatment and that you're pretty great to be able to help everyone when you're sick.

09:12 What do you remember Anna those first few months?

09:18 Well, the whole thing is kind of a fog.

09:23 I was 13.

09:25 When our world was flipped upside down.

09:30 The world supposed to be about me when I'm 13.

09:35 Have to be selfish or anything, but

09:39 My world forever changed

09:43 Denver

09:45 Three and a half years standard treatment for leukemia for boys.

09:52 We

09:54 All focused on Matthew. It was all about Matthew.

10:01 Or so many times

10:05 Xperia him

10:10 Lane Manor

10:14 Tired and sick

10:18 Pill with no hair is my little brother.

10:24 My baby, brother

10:27 He's always needed me, but now more than ever.

10:35 I wish I could read.

10:40 What is tripa?

10:46 Anna you are so remarkable with him.

10:54 You always were so devoted to take care of me with him. You spend hours playing games with them did anything to help bring him comfort?

11:03 You were at every appointment and able to travel with us.

11:08 You would sleep in the car with him and hold him as he traveled and threw up in the car number that.

11:22 I just wanted to take it away.

11:25 Most Wanted

11:28 Protective

11:34 I still think about what life would be like if I had not been the one to get sick.

11:44 But he was so brave and so strong.

11:52 He took it one day at a time. Yeah, he did and that's what a lot of people said about him.

11:59 If he felt good, we had a good day. We we play games or when on a did something or if he was sick. We just all sat at home and held him many times you fell asleep on my lap because you just wanted Mommy to hold you.

12:15 Or sister. Daddy. Dad was always there to

12:22 Able to take anytime you needed off work to be there.

12:30 We were blessed that he worked for the forest service and for the government to have government Family Insurance and the Family Leave Act. They couldn't exactly say no to that.

12:44 And his boss just

12:46 Said to take care of your family. Let him go he was there.

12:53 It was so sad to watch other families be torn apart one has to work and one has to stay with their sick kid and then have other children. They had to take care of in school and everything and we were so blessed to be able to

13:11 Have us they're all as a team every time.

13:16 I was homeschooled and could do my work in the car or not at all appointments.

13:27 Your dad could schedule a day off for a trip. Mom didn't work.

13:34 Matthew was tutored at home when he was feeling well enough the first year. Are you missed all of school except for the last month yet? Sometimes you felt good enough. I would take you to school to remember Matthew and you would get to go to music and PE at school.

13:54 Yes anime.

13:57 Anna

14:00 I know that.

14:03 Is there a decline about me?

14:06 This is so sad, and I'm tired.

14:11 Just Tires. It is why you were very brave Matthew lot of people said How brave you were

14:26 Can you tell me what makes you Brave?

14:30 But Make Me Brave, I not my favorite. What is

14:43 Because I'm tough kid. That is why.

14:48 Yeah does.

14:51 Brave yes.

14:54 Make you strong Jesus. Love you.

14:58 Yes, can you tell me a little bit about that Jesus to help me?

15:07 Lafayette youth stuff kid

15:14 And Mom and Dad.

15:17 Rewind it about me.

15:23 So

15:29 Southern sky

15:34 Anna

15:36 This my sister is crying about I'm here famous sick and I cancer.

15:46 You felt sick and you had cancer did that make me sad?

15:54 Was 3 years.

15:56 To help you and watch you go through a roller coaster of getting medic getting chemo and getting sick for a week. And then you start getting better and you'd feel strong and then you just start playing and and we knew that in a week you were going to get your medicine again and get sick all over again, but you didn't see that Matthew. You didn't know that it was going to go over so every day you just lived a brave day and and live what you had and and we had to help you through it as as we did it day by day because that's how you did it day-by-day stop. Okay. Stop making you cry.

16:43 I remember everything had to be so clean.

16:46 So so clean we were very good at it, but

16:52 I couldn't have friends over to the house because they might have something that.

16:59 Was making them sick that would make either me sick and then I can get back to be sick or would make Matthew sick and I think fully still got to go places but I remember specifically one day I went to youth group and have a great time and Matthews immune system was so low that the moment I got home. I had to go take a hot so we shower to get anything that might be on me off so I wouldn't get him sick immediately. Yep that was in the early times. When is the real intense chemo was just really wreaking havoc on his immune system and we had to be very careful. But then we did it. We also learn not to really live in a bubble, but we were real good at keeping our hands Glee. I remember having the hand sanitizer everywhere. We went and always cleaning his hands cuz he likes to rub his face and touch his face a lot.

17:59 And I remember dr. Storks being surprised how little he ended up in the hospital for being for being sick the flu or a cold or something or exactly and that was because we were so careful with him and yet at the same time. Dr. Stork wanted us to let him go to school and let him be out and doing things because kids do better when they're active and involved, but we could only do that. Once we knew his his immune system was strong enough and high enough in

18:33 Block numbers that he couldn't maybe resist a cold or something that you might be in contact with that was a tricky thing is since his leukemia is the white sell the job of the chemo was to kill off the fast-growing cells, which was his hair. That's why he lost his hair. He would he ended up with I don't know 7 or 8 blood transfusions in time because he lost the chemo would also kill off his red cells, but it had to kill off the white cells because that's where the cancer is and that's where your immune system, and that's right. So the trick in all the medications was killing off.

19:21 The white cells and yet keeping him at a level where he wasn't a completely zeroed out and could catch every little thing that flew through the air. So it's a real Balancing Act to keep that A&C number low so that the chemo is working and killing the cancer cells but high enough that he wasn't at wrist so

19:44 Seven or eight blood transfusions and 3 or 4 platelet transfusions you had in time and then it towards the end of your treatment one of the side effects for Down syndrome patients was he they started monitoring his immunoglobulin which is kind of the antibodies that we carry in our bodies and they have found in time that down syndrome children there antibodies are killed off to a point that children started dying and they didn't understand why because they're ANC and and numbers were we're not at that kind of a risk and they realized that it was because the antibodies for them were gone. So remember when he had to start getting those very expensive in IVIG.

20:39 Treatments infusions of antibodies

20:43 Yeah, and what is that was another thing that what they can do with blood donations how they can separate all that right? So if somebody is a a pint of blood that can actually pull out a person's antibodies and then they storm and save them up and give them infusions to people who need them and I was like blown away with it take that one that antibody the IVIG took what was it a dozen donations standard blood donations or something like that to create one time. I think if I remember right it's 3000 pints of blood can be the antibodies are drawn off of 3000 to give him one dose of IVIG 3000 pints of blood so I know crazy like that and that comes from blood donations blood drives things like the Red Cross or school or read when someone bites the bullet and sits there for 20 min.

21:43 With a needle in their arm firstly I freaked out about it, but I do it for the sake of others to see I mean, he he wouldn't have made it if blood transfusions didn't exist. No matter fact hit they said that you know, 50 years ago. Leukemia was a death sentence and now through research and and working with all the different drugs. He has come to survive it. You're now 18, you're officially cured as of last year 7 years after diagnosis. You got the

22:19 The final word you are cured of leukemia.

22:23 Yes, yay.

22:30 And I'm an adult now my mama Tommy. I know that you want to buy stuff or

22:41 Play around like a Outside Inside.

22:46 I want to get to play around a lot now, don't you?

22:52 There was other really neat things that happened. I know we had to make a wish and you were excited cuz you got to be enough up in the cockpit of the airplane. And what did they say when you got on the airplane?

23:06 Ipsen said that is Solomon support his family.

23:18 Parasyte anime

23:22 Matthew Stone

23:26 Weston family and some other fun things we got to do was

23:39 Caring cabin got to go spend a weekend on the coast and

23:47 With some other fun things we were able to do. What about who came to all your appointments here at at Doernbecher?

23:56 Summoners your chemo pal how to know Matt Matt and that funny his name was Matthew and your name's Matthew, so we called him what he want. And what did he do when he came to the hospital?

24:20 As Alaska last Heist from his bag.

24:28 What else?

24:34 He would sit with you right now. He likes you so.

24:40 Sometimes you were sad about having to come and get more chemo and get more sick again, huh and get another round chemo and you would go home and and then we would say chemo Matt is coming. And what would you do?

25:06 I know that it always made a difference to you when we had to come to get the to the clinic to get more chemo was a hotel with a

25:18 Resume at what did you want when we went to swim at swimming pool? So that made you happy and then like Anna said when you knew chemo Matt was going to be there that always helps you but then

25:32 We would be in the clinic and you would be happy and you'd be playing with Matt and sister would be there and Dad is sitting up on the table with you cuz you always wanted dad there and sometime sister on the other side and you had certain things you just wanted and we wanted to give you what you what you wanted and everything would be fine. And then they would come in the room with all the medicine on the tray and then you would start crying because you knew that they were going to give you your medicine.

26:03 And for three and a half years, what did you tell the nurses when they went to give you your medicine sweet times?

26:13 Gold you would tell them to ghost go.

26:20 Go slow. So you wanted the nurses to do what the same thing in your arm?

26:34 In what did we call your ports that they had your button or in your chest? What do we call that is fun access your button and you would say go slow and count to three always every time even if it was the same nurse and she knew it you would say. Hey go also and count to three and then you close your eyes and squeeze your hands and she's go to 3 and then you go.

27:07 Right

27:10 Do you remember that medicine that we used to put on your button before we got to the doctor? It was like a white lotion and I would we would be in the car and we'd be about a half an hour away and I would say you got to take off your shirt and you take off your shirt and I would get the cream and it would numb your skin, huh? So you get the cream and then you put a window over it. The Band-Aids are bad. Band-Aids are bad juju. You don't like those raised. No, no, no sticky Windows, right put the cream on and it would put the window over top of it and it would help to numb your button write about

27:56 Raley's Madison asleep, and it is on my back and

28:12 And I don't wake up. I feel dizzy medicine and then you would fall asleep. What they were doing was they would do a spinal tap on your back right at the bottom and you were asleep and they would give you medicine and then you would wake up and you felt kind of dizzy and every time you would find that Band-Aid because they had to put it there and you would go off now Band-Aids and you rip it off, huh?

28:49 You hated the Band-Aids. They had to put it on that you had.

28:54 I think you had close to 20 spinal taps in all this treatment and we would go into that little room and dad would sit with you.

29:04 And then they would give you some medicine and what would happen?

29:09 Play Sleep fall asleep on Daddy's lap, right? Yes. It's just the way you wanted it and they had to be very careful with the sedation because one time you actually aspirated which is you threw up and Swallowed Some of That So they were very very careful with you to treat you and take care of you. I tell you the

29:33 The doctors the nurses here at dornbeckers are such caring and compassionate and professional day. They're remarkable because they do this day in and day out year after year and to see children go through this. They just have gigantic hearts of love and care.

29:56 It was remarkable.

29:58 It would remember.

30:02 It would break dad's heart when they had to do spinal taps, cuz the sedation that they used was almost instant. He put it in the Ivy and

30:17 Is

30:19 Eyes roll back into the back of his head and he will just go limp. Dad every time he woke up. He would have a ninja effect and couldn't remember.

30:34 We remembered and dad would.

30:38 Come back into the room and just

30:42 Tears are in a daze.

30:46 Yeah watch.

30:50 Have Matthew go so limp and then to leave in there.

31:03 You had to you had allergic reaction to that medicine is called Methotrexate and it was kind of tricky trying to figure out that that's what was going wrong. Because again, your little body didn't react like typical children. So I remember one day we were shopping at the dollar store you and me and you were real happy and you were looking at some toys and I was just standing over a couple feet away and all of a sudden you got stiff as a board and you fell flat on the floor and you started wiggling and shaking you are having a seizure.

31:42 But they couldn't figure out why you would have a seizure and they finally figured out that you are actually allergic to that Methotrexate drug. So they gave you a special medicine which they give everybody now called leucovorin and that was supposed to take care of it. But the problem for you Matthew was most children react in two or three days you were reacting in eight or nine days so they couldn't figure it out for a while. And then when they did you say you still had another times of seizures and they ended up giving you that drug twice.

32:19 As a routine and as far as I know at the time, you're the only one that ever needed to have that rescue drug leucovorin at 48 hours and then at 72 hours because your body has a special type of body and they had to figure out figure it out first and then be extra careful to give you that antidote twice and then you were able to handle it really well.

32:45 I remember that first day.

32:48 You would been at the dollar store with Matthew and he had a seizure and you went to the ER and they checked him out and basically said he's fine and they didn't know what was wrong with him, but they sent you home.

33:02 So the three of us were at home, I think Dad was either in town or at work and

33:09 We had both of us hadn't really left his side all day and you simply stepped out to the garage for a second and it was just him and I I was probably 15.

33:30 He had a seizure, but they sent him home. So he was supposed to be fine. He was supposed to be okay, and he started having this.

33:39 Pull them out of the chair so we wouldn't fall and I laid him on the floor and

33:46 You tell them I'm shouting.

33:52 Yep.

33:54 Hornet

34:01 I came running in and I told you to hang on to him hold his head hold his head. I'll get it. I'll call 911.

34:08 They came again for the second time that day and that's when he had to have air flight to Portland because of it happening a second time in one day.

34:22 Wasn't there was something that really wasn't your dance something Anna that helps you get through this too. Yeah this whole process. So I grew up and dance various forms, I grew up in ballet and tumbling and got to the point where I was eligible for two addition for the elite team and I was accepted and they had very strict rules. That was the competition team and you had to be at every single rehearsal. You could only miss like one to season and still be allowed to compete but Matthew was sick, and he was of course my first priority. I was more than committed to my team.

35:08 But I had to be there for my family. So my teacher was very understanding and basically turned it into a vote took it to my peers and said

35:20 It's not me that it affects with her not being at class. It's you guys so you guys can decide as a team weather.

35:31 You are willing to put up with maybe a few extra rehearsals or catch up time with Anna and I took some private lessons to catch up and just be on track with my team and I'll never forget that my closest deers friends. I still see to this day because it was such a release for me. I had my thing. I had my dance I got to go when we were home. I got to go to class and it was an hour or two several times a week that I could just

36:09 Release and let go and several times the competitions would just of course happened to line up with another appointment that Matthew had to have till we come in either the day before or the day after I'd be all hyped up about my competition and had all my costumes and makeup and hair and everything and then the next day we turn around and go to the hospital and Matthew would have his appointment and I'm repairing my ballet shoes or sewing on new ribbons and

36:43 Things like that

36:46 Note 2

36:48 It was important to us Anna that you had as much as you could have caused so much was being taken from you. But we made a lot of effort to make sure you had your dancing. It really did become your Anchor It Came you're out became your outlet and your your place to regain your strength and it was a bit. It was a real blessing that was mine. And the only thing that was constant as much as everybody got to know me almost as well as they knew Matthew because I was there with him. It was still

37:30 About Matthew and not that I was jealous or no never wished that I could have more attention. It's just so you just feel so alone.

37:46 As a sibling

37:49 Even though your family is there and you have your face in your friends. You just feel so alone because nobody else knows what it's like your parents are feeling something different.

38:03 And the doctors feel something different and you're the patient feel something different and everybody feels different and The Sibling aspect is just so

38:14 Alone

38:18 We were definitely a team the four of us. We were there were times we told the doctors. They didn't know what they were doing. Well and there was times they wouldn't let us all in the same room when we were at the bend hospital. We said no we all take care of him every one of us had a different way of hearing and remembering and it was critical each one of us you and Dad and me was all of my notes in the big black notebook. I keeping track of notes. So what we could take care of our one patient Matthew, where is the doctors had so many others and we demanded their attention.

38:57 To get him through this as best we could and we love you very much Matthew, and we're so happy.

39:05 That you're a boy.

39:08 Did we make it did you make it to your cancer? Yeah.

39:22 We love you, buddy.