November 1, 2007 Dealing With the Death of a Child to Leukemia – Lisa Nehmer
November 1st, 2007 . by The Grief Blog
HEALING THE GRIEVING HEART
Dealing with the Death of a Child to Leukemia
Hosts:? Dr. Gloria Horsley and Dr. Heidi Horsley
With guest:? Lisa Nehmer
November 1, 2007
G:?? Hello.? I?m Dr. Gloria Horsley with my co-host
H:?? Dr. Heidi Horsley.
G:?? Each week, Heidi and I welcome you to Healing the Grieving Heart, a show of hope and conversation with those who?ve suffered the loss of a loved one and for health care professionals who work in this most difficult field.? And always the message is others have been there before you and made it, you can, too.? You need not walk alone.? If you?re listening to our Thursday live Internet show, please join Heidi, me, and our guest on the show by calling our toll free number,?????????????? 1-866-472-5792?????? , with questions or comments regarding the losses in your life.? These shows are archived on our blog, www.thegriefblog.com as well as www.thecompassionatefriends.org websites.? All shows can be downloaded on Itunes and transcripts can be accessed on www.thegriefblog.com.? Good morning, Heidi.
H: Good morning, mom.
G: Our blog is so heartfelt.? When I go on the blog and we answer these emails that come in, they?re just amazing, aren?t they?
H: Yeah, they?re very heart-wrenching.
G: The things that people are going through and dealing with and the idea that people log in and we hope you?ll all go on the blog and log in and give our folks who send us these emails advice, comments, thoughts about what you?ve done.? Some of the comments we get are just wonderful, aren?t they, Heidi?
H: They are.? And like you said, thoughts about how did you get through it.? I?ve noticed a lot of people are saying I don?t know how I?m going to deal with this pain.? I can?t do it anymore.? And other people are coming on saying I was there, too.? I had that kind of pain.? Hang in there.? You?re not alone.? You?re going to get through this.
G: So you guys out there listening to this show, you?re our advice givers, the people who are a little further down the road.? Some of you are there to get the advice, and some of you are a little further down the road that can give it, so we truly hope that you?ll log in.? We have a couple of emails that are really heart-rendering.? One from Libby talking about her daughter and her boyfriend were killed on the highway October 7.? Their car had broken down and they got out and they were killed together.
H: And they got out to help somebody and were run over.
G: Yeah, incredible.? So if you?ve got any thoughts for Libby, please send them to her, and our thoughts for her are we send our love and we know that this is an incredibly difficult time for you.
H: Absolutely.? And I wanted to say one more thing about that email.? I thought it was so wonderful that they buried.? They were only 18 and 20, the two that died, and they were boyfriend girlfriend.? They buried them together.? I love that.
G: Yeah, that?s an incredible thing.? And then another email we have up that you might want to log in and give some help to was about a husband who was murdered on October 8th.? So again, the father of two boys.? It?s just a very very hard thing, and again our hearts go out and if our audience, if you have any comments, please go on the blog and blog in and give people support.
H: And I give people so much credit for getting on the blog early after a loss and sharing their stories so that they can reach out to others.
G: Absolutely, and Heidi and I talk about how important it is to tell your story and to get it out there and to get through this difficult time that you?re having.? One of the things that I think was difficult for a lot of folks was Halloween, Heidi.? It was last night and I know for a lot of people who lost small children, for some people it?s a non-event, but for other people, it?s a huge holiday, isn?t it?
H: Very much because you trick-or-treat and people are ringing your doorbell and there?s, like you said, all these children dressed up in all these costumes and it brings back, I think, a lot of memories and memories of what you?ve lost.
G: Um hm.? But also as you get a little further down the road, we?ve talked about the continuing bonds and it can also bring out happy memories later on.
H: It can and it can be a joyful wonderful experience to see a child that was your child?s age, like you said, after you?ve gotten further down the road and kind of have children in your life.
G: Yeah, and getting the pictures out of your children and we?ve got Thanksgiving coming up and we just wanted to say that we?ll be talking a little bit more about the holidays and getting through and our heart goes out to you this time of year and we, again, the most we can say is others have been there before you and made it and we know you will, too, right, Heidi?
H: Absolutely.? And don?t be afraid to accept help.? It?s hard to accept help oftentimes.? It?s oftentimes easier to give help, but please accept it and realize that when you accept it, you?re helping others heal.? Those that are helping you are healing.
G: Absolutely, because we know one of the first things that come to your healing is taking care of yourself at first and then reaching out to others as time goes on.? It can be very healing.? And we have somebody on the show who has done that in spates, right, Heidi?
H: Absolutely.
G: Could you introduce Lisa?
H: Yes, I?d be honored to.? Our guest today is Lisa Nehmer, and our topic is ?Dealing with the Death of a Child to Leukemia.?? Lisa?s 10-year-old son David was diagnosed with AML leukemia in 1996.? Her life was never the same.? David?s protocol required three rounds of chemotherapy and a bone marrow transplant donated by his 14-year-old sister Rachel.? David fought hard for two years until he passed away on August 6, 1998, from a lung infection.? In David?s memory, Lisa who is a social worker started the Healing Heart Foundation.? The foundation mission is to help chronically terminally-ill children with their pain and to improve palliative care for chronically and terminally-ill children.? Lisa has also founded the David Center for Pain and Palliative Care at Hackensack University Medical Center in New Jersey.? Welcome to the show, Lisa.
L: Oh, thanks so much for having me.
G: It?s great to have you on the show, Lisa, and we?re just really impressed with the work you?ve been doing to help families and children.? Before we talk about your foundation, could you tell us a little bit about David and his experience and your experience?
L: Sure.? David was a pretty amazing normal little 10-year-old child who really played soccer, played hockey, loved life, and started getting tired and lots of sinus infections.? We had him at the pediatrician.? They kept giving him the antibiotics.? Turned out it wasn?t really being tired and infections.? It turned out to be leukemia, which we thought, you know, everybody?s like didn?t you notice bruises?? You know, you have a 10-year-old kid who?s
H: an active boy.
L: an active boy, and at 10, they?re not letting you shower them any more.
H: That?s true.? Yes.
L: So, we just thought he was tired.
G: It?s so great that you?re coming in with this right now early because I know our audience out there is going oh, my gosh.? I feel so guilty.? I?ve lost a child and here you are early on expressing how difficult it was.
L: There?s a lot of guilt involved.? You?re the mom.? You?re supposed to keep your child safe and sound, and if you don?t do that, what kind of mom are you?? And that?s kind of what your identity is as a woman, as a mom, so what do you do with all this?
G: So people are saying to you, didn?t you notice?? And you?re taking David in and talk a little more about him.
L: Absolutely.? We kind of explained, obviously, he?s an active 10-year-old.? He was having trouble breathing.? It turned out his lymph nodes were so swollen they were strangling his trachea.? He was admitted to the ICU immediately.? Did a bunch of blood tests and kind of in the middle of the night came in and said well, your son has leukemia.? And we?re kind of looking at him like well, wait a minute.? He was having trouble breathing.? Where is this coming from?? And obviously the next day, the oncologist came in and told us he had AML leukemia which is an adult form of leukemia that children get and the only way that this can be treated is with in-patient chemotherapy and a bone-marrow transplant.
G: So they dropped that right on you.
L: Within the first ten hours of knowing.? The next morning, they did a bone marrow biopsy and at that time put chemotherapy right into his spine so we had about eight or ten hours to make these decisions ? do we want to keep him here?? What do we want to do?? And my husband is a physician so that made it even more urgent like okay, we really need to have good medical care here.? We know what?s going on.? So it was a torturous.
G: So basically you took a boy who maybe had an allergy problem or had asthma or who knows what into the hospital.? The next day he?s got leukemia and he?s on chemotherapy.
L: Exactly.
G: What an incredible shock.
L: At that point, the infection was so bad.? He had 104 fever and we were hoping he was making it through the night so you go from everything having fajitas on the table ready for dinner and all of us eating to oh, my God, he?s having trouble breathing.? Let?s go to the emergency room.? And obviously, that was my last normal day of an intact four-person family.
G: Oh, what a shock.
H: And I was going to say something that it is interesting hearing your story.? For parents out there that are listening that are feeling guilty that they didn?t recognize the signs, this is such a good example of how you really couldn?t recognize the signs.? Here your son?s father is a physician.
L: Right.
H: And the signs were still not recognized.
L: There?s no possible way to have known this other than taking a blood test.
H: Right.? Okay.
L: We had been at the pediatrician in the morning, and the pediatrician wanted to do a blood test and my son being the negotiator that he was said can I please have 24 hours?? I promise if I?m not better in 24 hours, I will come back 9:00 o?clock tomorrow morning and you can take my blood.? And the pediatrician was like, fine.? We weren?t.? None of us.? The pediatrician, my husband, us.? We didn?t think that we were.? No one thinks you?re dealing with a life-threatening disease.? Your child has a cold.? You?re not going to the life-threatening disease.
H: Well, and David was so healthy and playing sports.
L: Yeah.? Oh, he was physically healthy.? Happy kid with tons of friends so this was totally surprised.
G: Well, it?s time for us to go to break now, and I?m your host, Dr. Gloria Horsley, and when we come back, we?re going to hear more from Lisa Nehmer about ?Dealing with the Death of a Child to Leukemia.?? Please stay tuned to hear more, and you can join us on our show by calling our toll-free number,?????????????? 1-866-472-5792?????? .? If you?d like to email us about this show or upcoming shows, you can reach Heidi and I through our blog, www.thegriefblog.com.? Please stay tuned for more.
Welcome back, Lisa.? When we went to break, we were talking a little bit about David and what a wonderful child he was and great at sports and was able to talk to the doctor even out of taking a blood sample, which I thought was pretty amazing.
L: He was a real good negotiator.
G: and how he was suddenly diagnosed.? The family went, as you said, from eating fajitas, or sitting down at the table with fajitas, to a boy who wasn?t able to breathe, to into the hospital and the next day on to chemotherapy and a journey for the family.? Well, I know one of the things that when I met you at a conference for pediatric palliative care, I was impressed with the fact about your daughter giving him a bone marrow transplant
L: Um hm.? Rachel.
G: Yeah, Rachel, and tell us how that happened and how the family dealt with that and how Rachel dealt with it.
L: Well, it?s pretty funny that it?s Halloween because we all got tested on Halloween for our blood typing to see if she was a match.? We had about a 25% chance that it would be her.? We were lucky enough that she was his match, a 10-for-10 match.
H: That?s amazing.
L: They had the exact same DNA.? In all of the horrendous stuff about the leukemia, that was the little bright spot, and we sat and talked to Rachel and explained ? she was 14.? You have a choice.? You can do this or not.? And she looked at us like we were totally crazy and said of course, there?s no doubt in my mind that I will be doing this, and he had to go through the three rounds of chemo before he
G: You know, that makes me want to cry, but it?s really heart rendering.
L: She was so amazing about it.
G: And to think that she has the exact same DNA.? I mean there?s something about that that?s pretty phenomenal.
L: Yeah, there?s something that just ? that was the way it was supposed to be, and she got very upset when people said oh, you?re a hero.? You?re saving your brother.? And she kept saying, I?m not the hero.? He?s the hero.? He?s the one that deals with the illness on a day-by-day basis.? I?ll have one day of pain.? This is an accident of genetics that I can help him and that?s why I?m part of this picture, but we all need to focus on him.
H: Very mature.
L: And constantly would say that.
G: Now how is she now and how did she
L: She?s pretty amazing.
G: Has it impacted her, do you think, that she has the same DNA as her brother?
L: I think it impacts her a lot.? I don?t think in a negative way.? I think in a positive way.? I think she feels like she carries his spirit with her and has made a point that she is going to live her life to the fullest no matter what.? She?s a trapeze artist, that?s what she does.? As a matter of fact, just to brag a little bit about my child who just got accepted to the festival in Paris, the Cirque demain.
G: Oh my goodness.
L: So she?s going to be.? It?s like the circus Olympics and she?s one of the only acts from the United States, her and her boyfriend, Ben, her duo madrona, and I?m so proud of her, and she just made a decision that she needed to follow her passion, and I?m so incredibly proud of who she is and what she?s become, being able to take in all of the sadness and turn it into this positive.
G: That?s an amazing thing, isn?t it, Heidi? about some of the siblings we interview on the show.
H: Well, and it?s important, Lisa, for the parents out there to hear that your daughter has gone on to have an amazing life and do wonderful things and live a full life and become because she?s got strengths that other kids don?t have because of what she?s been through.
L: Exactly.? It?s interesting because when, I guess, about a month after David died, she wanted to go into New York City or something, and I was like absolutely not.? You can?t do that, and she got right into my face and she said, mom, I didn?t die with David.? I?m alive.? I?m here, and you?re going to have to let me be me, and walked away.? And I think that made a huge impression on me because I realized that all I wanted to do was keep her ? hold on and tie her to her bed and keep her safe forever, and that would have been the worst thing that I could have done.
G: Because she is an only child now, right?
L: Exactly.
H: And she was a teenager when David died.
L: She was 16 when he died.
H: That?s such a hard time for families, exactly what you?re saying, the dynamics, Lisa, because teenagers are needing more autonomy.? They?re needing to separate.? And parents get nervous and want to hold them closer.
L: Exactly, and I?m lucky enough that she was independent enough to be able to say to me, I can?t let you do this to me, and I?m not going to let you do this to me.
H: No, I need to have a normal childhood.
G: Did she have counseling to get to that, Lisa, or was she able to get there on her own?
L: Minimal counseling.? We had done some family counseling right afterwards.? She probably went for a couple months and then she said, mom, this isn?t doing anything for me, and I need to walk away from this, and she did, and she had a great support system.? She had great friends, and we kind of let her do what she needed to do.
G: Um hm.? So, for the audience out there, I always say, counseling is fine if you feel like you need to have counseling and that there?s nothing wrong with it; however, there are some people who won?t benefit from it or don?t want to do it, and some kids who they don?t have to and they can still move on.
L: For her, it worked for a short period of time, and then she just needed to deal with it.? She always knew that we were there if she needed anything, and that she could go to counseling at any time.? It was an option that was there for her, but at that point, we didn?t feel like we needed to push her.
G: So I?m interested.? You have formed this foundation, Healing Heart Foundation, and it?s involved with pain and palliative care, so I wanted to talk to you a little bit about the pain that David had in that how do families deal with it after, that memory of the pain, and maybe how do you deal with the hospital after a child dies if they didn?t feel like they did it correctly or, you know.
H: Good question, because I think people can get into just being consumed by thinking about the pain their children were in at the end.
L: Pain was always an issue for David.? We were pretty lucky because we had Gary Walco who was his pain specialist at Hackensack who really taught him self-hypnosis.? He really was wonderful with him, but it still wasn?t always managed and I guess I felt like this is a child that should be managed 100% of the time, and it wasn?t.
G: Yeah, there?s no reason not to manage it.? Now did you feel that he was terminally ill or did you continue?? You continued with the hope that he?d recover, right?
L: Right.? He was in remission after the bone marrow transplant.? He was doing great, and we thought we were kind of out of the woods.? And then what we found out was that the chemotherapy that they do before the bone marrow transplant had destroyed a piece of his lung so that was more our issue.? Obviously it was the leukemia that killed him but it wasn?t an active case.? It was the complications.
G: Was that a mistake that they made in your mind and how does our audience deal out there that?s sitting there with what they feel like
L: I don?t think that was a mistake.? I think it was a risk that we took.
G: Okay.
L: I think that when you sign your child up to have a bone marrow transplant, you know that they could die in the process.? But they?re going to die if you don?t do it so you?re kind of, as a parent, you?re between a rock and a hard place when they hand you that 25-page document to sign with anything and everything that could happen to your child, and you?re signing this and you feel like, oh, my God, I just signed my child?s life away but if I don?t sign it, I?m definitely signing my child?s life away.
H: And that must have been devastating for the family, and I?m thinking for Rachel.? Here David had been doing well, and it had been a successful bone marrow transplant, and then that you guys get this news.
L: Yeah.? It was pretty devastating.
G: Now did he get out of the hospital after the transplant?
L: Oh, yeah.? He was in the hospital for about three months, and then he was home for almost six months, in and out.? He was able to go back to school a little bit and he was doing great.? He had a little bit of graft-versus-host disease which comes from the way that he accepts Rachel?s blood transplant, so a little bit in his eyes and stomach, but that was definitely dealable.? But now, it is what it was, you know.
G: Now, here your husband is.? He?s a doctor.? What was his specialty?
L: Orthopedic surgery.
G: Uh huh.? He?s your ex-husband, right?
L: My ex-husband.
G: I was wondering from a male point of view and from a doctor point of view for our audience out there who have husbands who are doctors or ex-husbands, what did you see in that, and also men and grief.? I don?t know if you have any thoughts on that.
L: I think it?s really hard, especially for physicians who are used to being in control and going in and finding the problem, especially as an orthopedic surgeon.? The bone is broken.? You fix it.? It?s done.? He couldn?t do that for his son and kept a lot of his emotions inside, and it made it very difficult because you have to talk about it somewhere along the line.? And most of the time we were okay and we could get through each crisis, but he found his solace in work and that?s where he put a lot of energy.? He loves his son and loved me with his heart and soul but it was just very very difficult.
G: Well, I?m thinking.? He also could run in and see him.? Did he work at the same hospital?
L: When he was doing his initial chemotherapy but not the bone marrow transplant.
G: I was thinking you could run in and say hi and then run to work.
L: Right.
G: You could really compartmentalize it.
L: He saw him every day.? We made a decision when David first got sick that we were going to do dinner as a family every night.
G: Oh, my goodness.
L: because we felt like we weren?t going to lose that because David was in the hospital so even if Rachel had a ton of homework, she knew she had to come at least for one hour so that the four of us could sit together.? Even if David was asleep, the three of us at least had an hour ? we knew we had an hour of quality family time every day.
G: Oh, that?s kind of amazing, isn?t it, Heidi?
H: It is, and I?m thinking ? and I?ve heard these stories before.? It must be very strange to have a routine and get to know the medical staff really well and have all these people in your life because they?re all trying to save David?s life, and have all these rituals around going to the hospital, etc., and then all of a sudden your son dies and not only do you lose your son, but you lose all these people in the medical community.
G: You know, Heidi, you?re making an important point, and I think we should come back from break on that point on how do you deal with it when you?ve had this whole system going on and suddenly it ends.? We?re coming up on break, and I?m your host Dr. Gloria Horsley with my co-host Dr. Heidi Horsley, and we?re speaking to Lisa Nehmer about ?Dealing with the Death of a Child to Leukemia.?? If you?d like to call into our show, our toll free number is?????????????? 1-866-472-5792?????? .? If you?d like to email us, you can email us through our blog, www.thegriefblog.com.? Please stay tuned for more.
Well, when we went to break, one thing I want to do is I want to get to the foundation towards the end of this segment, but before we go to the foundation, we kind of left the last segment on talking about how David was in the hospital, how he had a bone marrow transplant, how he had some damage to his lungs that made it impossible for him to go through the healing process, and so he becomes, I assume, terminally ill.? The whole community, the hospital is working with him.? Of course, we always hold out hope, right, Lisa?
L: Oh, we always do.
G: We never give out hope, but we have a very very ill child, and we have a community, and Lisa and the family, which is a wonderful thing, were going and having dinner with David every night with his sister, Rachel was there, too, even though she had a lot of homework, she?d go to the hospital, and they would all sit around.? I?m curious as to what you ate.? Did you take the meal?? My husband was just in the hospital, and I hate to say it, but I found the food barely edible, so what did you do?
L: We used to either ? Steve would bring food up when he came in with Rachel, and I?d say at least two or three times a week, someone sent us dinner.? Either friends made us dinner or someone sent us dinner, so we were very very lucky.? I had a huge support system with friends and family.? I am so blessed in that way.
G: Now talk to us about your hospital system and then your friends and family system.? Talk about people coming and going.
L: Well, the people in the hospital become the primary caregivers of your child, and I was lucky because they let me take part in that, but they really become your family.? They?re the people you see day in and night.? They?re seeing you with the filthy dirty hair and the pajamas you?ve just walked out of bed with so they see you at the good times, the bad times, and when you?re really sad just talking to them.
G: So are you saying you slept there sometimes?
L: I slept there every night.
G: Oh, you did?
L: I did.? I slept there every night, and when I didn?t, my husband did.? One of us slept there every single night.
G: For how long?? How many nights do you guess?
L: How many nights?? Oh, in two years, maybe we were home six months at most.
H: So this was your other house.
L: When he was doing his initial chemotherapy, we were at Overlook Hospital in Summit, which is kind of a community hospital, and they used to leave his room.? His room was decorated literally like a regular bedroom and when we could go home for two days between treatments, they would just leave his room and we?d keep coming back.
H: This sounds like a wonderful hospital.
L: We were very very lucky.
G: Yeah, and that, Heidi, that brings me to an email.? I?d like to read this email to Lisa because I think it?s really kind of what we?re talking about.? And by the way, we love getting your emails, and you can send them to us through www.thegriefblog.com.? It?s an email from Susan from Salt Lake City, Utah, and she said, I saw you were going to do a show about having a child with leukemia, and Susan says that my 4-year-old daughter died of leukemia last year.? I frankly feel bitter toward the medical system.? We went in and out of hospice care at home and Wendy had to deal with a different staff each time we left the hospital.? It makes me cry just to think about it.
H: Wow.
G: So did you have any of those problems with people?
L: No.? We were really lucky that we had the same medical team each time.? Obviously, the nurses change shifts but basically everything was the same.
G: He didn?t go into hospice care then.
L: It didn?t really.? We?re talking nine years ago.? There really wasn?t a whole lot of pediatric hospice at all at that time.
G: In some ways, it?s probably lucky that Susan had that.
L: Yeah.? Pediatric ? that?s one of my passions that I?m trying to work on is to see if we can get.? In our area in New Jersey, there?s no pediatric hospice and it?s pretty scary that there is nothing out there.
G: Well, I think California.? They?re trying to change the laws now so that, all over the nation so that the same staff ? that you can have the same staff when you go in and out, so hopefully, Wendy, that will happen.? I think Lisa?s a perfect example, I mean Susan, of how you can ? Susan who sent the email ? of how you can get involved in your own state and I think you might want to look into Utah and see what they?re doing about keeping the same staff.? I know there?s a whole bunch going on in legislation so it might be a place where you can impact, don?t you think, Lisa?
L: Definitely where you can impact, and even just going to whatever the hospice was and explaining what the situation was and sometimes they don?t get that feedback because families are so upset and are grieving and they kind of walk away and they don?t get the feedback that could help them change it for the next family.? So even if you go back to where you got your care and be able to give them some concrete suggestions, that might make you feel better if the next family doesn?t have to go through the hell that you went through.
H: And also tell them what they did that you liked so they?ll continue to do those things.
L: Absolutely.? That?s important as well.
G: Yeah, you want ? because people who are working in this field are generally pretty good-hearted folks and any people who work in pediatrics, so Susan, if you can give em some feedback and positive and negative, that would be probably a great thing to do for you.? Well, I think that takes a little bit to your foundation, too.? Could you tell us a little bit about your foundation?? Why you did it?? How you got involved in it?
H: And when you started it?
L: I started it about six months to a year after David passed away.? I just couldn?t sit and do nothing and I realized I needed to make some changes in things that I saw in the hospital with physicians and so we sat at my kitchen table with all of my friends and said, okay, this is what I want to do.? Who?s going to help me do this?? And they all did.? A good friend of mine is an attorney who?s an accountant.? They got me through all of the legal stuff and I was able to hook up with Gary Walco who at the time was the head of psychology at Tomorrows Children?s Institute which is the cancer place at Hackensack, children?s cancer service, and he was enormous in getting me to kind of focus on goals.? He knew the pain was a problem.? Let?s try and do this and then basically what you have to do is raise money and raise awareness and we did golf outings.? I did craft fairs.? Basically for three years, it was my full-time job.? It was all I did, and I realized as I was doing it, I was also healing.
G: And tell us why.
L: Because I was able to take the focus off of myself and my own sadness and try and focus more of my energy on other people and how I could help them from being in that same spot that I was in.
G: Now when did you start doing this?? How long after?
L: It was about six months after.? It was January of ?99 and he died in August of ?98.
G: So six months later you got a group of people together and you started talking.
L: Yup.
G: That?s great.? I mean you didn?t jump in and do it right away.? You couldn?t.? It takes a long time.? It takes awhile to do a foundation.
L: There was no possible way.? I think when I finally realized that what I needed to focus on was David?s life not David?s death is when it turned around for me, and I know that sounds very simplistic
H: No.
L: but it is the hardest thing in the world to do.? Now I think all of us who have lost a child somewhere or think about do I want to keep going or do I want to stop, and for me it?s a very clear-cut decision about what do I want to do?? Do I want to die and lay in my bed or do I want to get up and face the world and deal with this?
G: Because there are not a lot of choices are there?
L: There aren?t a lot of choices, and you really just have to decide and for me it was ? I have this beautiful daughter.? I have a phenomenal husband.? I need to move forward.
G: I wanted to ask Heidi.? Heidi, from the sibling point of view, do you feel like the same thing happens?
H: Oh, absolutely.? I think my own story is very parallel to Lisa?s where you ? I didn?t want to live and I thought, okay, I didn?t want to be in the pain I was in.? I wanted to have the pain leave and so I was like, you know, what am I going to do?? I can either live or I can be in a fetal position and hope that I die eventually and at some point, I decided I want to live and how am I going to make purpose and meaning out of my life and it?s what Lisa said.? I?m going to reach out to others and help them heal so that I can help myself in return heal.
G: And it sounds like Rachel?s done it through her art and through her ? the things that she?s
L: Rachel has always been very creative and that?s where she put her energy.
H: I also love that Rachel?s doing the acrobatics and I feel like she?s in the heavens.? I don?t know.? That sounds strange but I kind of think.
L: No.? That?s a wonderful image.? Yeah.
H: And she?s kind of like reaching out in a positive way.
G: Before we go to break, could you talk a little bit about the heart?
L: Oh.? We had a heart in our family that was called the ?healing heart.?? David had had a ski accident and I had just bought it and I kind of put it around his neck and I said, you know, if you, this will be all the family strength and love and it?ll get you through this, and kind of after that everybody who got sick, oh, I want the heart, I want the heart, and it was this turquoise heart on a black silk cord and when David was first diagnosed, one of the first things he asked for was the healing heart.? So hence the name of the foundation.
G: And where?s the heart now?
L: Buried with him.
G: Ahhh.
H: I love that.
L: And we each have our own.
G: Oh, you each have your own?
L: We each have our own heart.? On the year anniversary of David?s bone marrow, he bought his sister a little, the little tiffany heart, and the next day was Valentine?s Day, and my husband and David bought me the bigger one, so my daughter and I have matching ones.? When David was in the ICU and dying, my husband realized that he didn?t have a heart, so the child life specialist made this little clay medallion and put my son?s fingerprint into it and painted it for him and he keeps it in his pocket so that all four of us could share the heart strength.
G: Ah.? That?s a wonderful story.
H: It absolutely is.
G: And when we come back from break, I want to talk a little bit more about the foundation.? How people can get in touch with you.? You?ve got a wonderful website if people want to read more and if they want to see a picture of your beautiful son, it is on the website.? It?s a wonderful picture.? Let?s give the website right now before we go to break.? Can you give it to our audience?
L: It?s www.thehealingheartfoundation.com or dot org, either one.
G: Great, so and we?ll try to get that up on our website.? Well, it?s time to go to break, and I?m your host, Dr. Gloria Horsley, with my co-host, Dr. Heidi Horsley, and we?re talking to Lisa Nehmer today about ?Dealing with the Death of a Child to Leukemia.?? You can reach us through our blog, www.thegriefblog.com, and we hope that you will listen to our archived shows.? We want to remind you that you can tell your friends about it, and these shows can be listened to 24 hours a day, 7 days a week.? Please stay tuned for more.
Well, Lisa, we?re into our last segment and one thing I want to say is you?re just such an inspiration.? Here you went on with your friends to do the foundation and spent what? like three years doing that, and now you ? then you decided to go back to school?
L: Yeah, I went back to school two years ago.? I was
G: Now tell our audience how long has it been since David died?
L: Uh, David passed away in 1998, August, so its nine years.
G: Okay.? So say ? just to give our audience an idea ? for three years, what, you did the foundation? Five years
L: Right, I mean I still do that, not as focused, but I still do that
G: For them to set up a foundation if someone here gets inspired by your story and decides, okay, I can do a foundation.? It?s a process, right?
L: It?s a huge process.? There?s a lot of legal things that need to be done and need to be incorporated and board of directors.? I mean, things that like all you want to do is go raise money and make it better, but unfortunately, there?s a lot of legal stuff because you do need to be tax exempt and it needs to go through all government regulations so it is a process.
G: So you could either set up your own foundation or you could go and help somebody else with their foundation, right?
L: Absolutely, and there?s a lot of us out there.
G: So how would people get in touch with you if they live in the New Jersey area or anywhere?
L: Yes.
G: They could go on to your website to find you?
L: Absolutely.? They could go on the website or you can email me directly and I?m more than happy to help anybody at any time.
G: Now the foundation is www.thehealingheartfoundation.com.
L: Correct.
G: And so then you went back to school a couple of years ago which should be, what, seven years after David died?
L: Right.? And I had been working in doctor?s offices doing patient education, doing lots of things with the foundation and doing speaking and realizing that really what I loved was the social work aspect of it and so I went back to school.? I got my MSW and now I am working at an agency, and what I?m doing is I?m working with older adults doing end-of-life things and other social services and case management which is totally opposite of my foundation, but I?m trying to keep myself out of my box a little bit, trying to keep myself out of that comfort zone all the time and not get too settled in one thing because that?s when I end up going back to those deep dark places, and I don?t want to do that.
H: Right.
G: And some of our audience at times make the comment that one of the things that you lose with the child that is a positive thing is a lot of fear about your life.? You?re willing to take a few more risks.? Did you find that?
L: Absolutely.? I?ve done more traveling.? I met my daughter in New Zealand and she took me on swing bridges over gorges and hiking in glaciers which if you had asked me could I have done that? I would have said absolutely no way, and its really taken me a lot further and I think the person that I am today is much more content in who I am because I understand where I came from so much better.
H: And you?re not afraid to speak candidly and openly with your clients about end of life.
L: Absolutely.? It?s a very comfortable place for me.? I?m not afraid to die any more because I?ve seen it up close and personal, and it?s just not a fear for me, and I?m okay talking about it.
G: That?s great, and I?m sure you?re doing that great work with those folks.? It?s interesting to me that you?ve gone on to work with adults and I like the idea of getting out of the box and I hope what our audience is hearing is the newly bereaved, you?ve got to take care of yourself, right, Lisa?
L: Oh, absolutely.? There is no way I could do this immediately.? You need to take care of yourself.? You need to refill your tanks, your spirit.
G: And then later on, if you can start taking little steps to move out and then go back to school or whatever, that kind of the sky?s the limit.
H: And you also started the David Center for Pain and Palliative Care.
G: Yeah, talk a little bit about that.
L: Right.? That?s the pain service at Hackensack University, and we are doing some pretty exciting things there.? We?re working on building up our palliative care service there.? We have a committee of all of the pediatric directors that meet.? Gary Walco is the head of the David Center, the director.? We?ve hired Susan Cohen who works in the pediatric ICU, and what she does is she meets with every family, especially families who are terminally ? who had terminally-ill diagnosis, and she helps the families and kind of is the negotiator between the physicians and nurses and the family, and she can ? do they want a lot of communication?? Do they not want the information?? And it really has made a difference, and she?s paying attention to the children?s spirituality, which is huge.
G: Oh, that?s a different thing, isn?t it?? That?s interesting.
L: Yeah.? We?re trying to get some data because I think unfortunately, hospitals are based on data and funding and unless we get some hard data that these are things that are needed, it?s not going to happen.? So that?s what we?re doing and we have some research studies out in other pediatric centers so it?s pretty exciting.
G: So if people wanted to volunteer and find out what you?re doing for their own community, how would they do that?
L: They can either go onto the website or they can email me directly.
G: Okay, and do you want me to give them your email?
L: Yeah, I can give you my regular email which is lssn16@comcast.net.
G: So if you hear something today.? If you?ve heard something that makes you think that that might be some area you want to go into or you want to know more about, please do get in touch with Lisa.
L: Yeah.? I am more than happy to communicate with anybody.
G: Well, Lisa, we?ve been so happy to have you on the show today.? It?s been really fascinating hearing about the things that you?re doing and how you ? the story of your son?s death and all the heart rendering things and how your family has moved along through this.? It?s a very inspiring thing to everyone out there and again, we want to thank you so much for being on the show.
L: Well, thank you for giving me the opportunity to tell my story and to be able to talk about the foundation.? I truly appreciate it, and both of you do amazing work and are inspiring as well.
G: Oh, thank you.
H: Thanks, Lisa.
G: Well, our guest today was Lisa Nehmer, and our guest next week will be Abel Keogh, author of a memoir, A Room for Two based on the suicide of his wife which caused the premature birth of his daughter.? This show is archived on www.thegriefblog.com as well as www.thecompassionatefriends.org website.? Please stay tuned again next Thursday at 9:00 Pacific Standard Time, 12:00 Eastern, for more of Healing the Grieving Heart, a show of hope, renewal and support.? Remember others have been there before you and made it.? You can, too.? You need not walk alone.? Thanks for listening.? I?m your host, Dr. Gloria Horsley, with my co-host
H: Dr. Heidi Horsley, and I wanted to end by saying, by reading something that Lisa wrote after David died.? If love alone could have healed David, the power of the heart would have prevailed.? David?s fight ended August 6, 1998, but the light that comes from his heart continues to shine within each of us through our healing hearts.

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