The Helping TouchWritten and Designed by Helena Steffens

Table of Contents

Introduction........................................................................................................... 4

Chapter 1.................................................................................................................... 6

Chapter 2................................................................................................................... 13

Chapter 3.....................................................................................................................16

Chapter 4....................................................................................................................24

Conclusion..................................................................................................................33

DedicationThis book is dedicated to There With Care and the Bogoyo Family. Thank you for all that you

have helped me with!

Foreword Throughout the entire world, there are too many people with cancer and critical illnesses and un-fortunately many are children. As you can probably infer, it is extremely hard to have a child with a criti-cal illness. Suddenly everything must become all about him or her and it seems as if the world is caving in. Even though these critical illnesses are many times unavoidable and therefore even more harsh, at least there is one thing to help subside it: organizations like There With Care. There With Care, an organization founded in Boulder, Colorado in 2001 and continued in the Bay Area, attempts to relieve the incredible stress brought on by critical illness by assisting families in any way possible. Whether it is walking the dog, picking up groceries, paying for gas, driving a sibling to soccer practice, etc, There With Care will willingly and compassionately do it. There With Care was brought to the Bay Area when a wonderful lady named Michelle Chang realized how important the organization really is. When her daughter, Christine, was diagnosed with a rare form of eye cancer, the family went through many hard times. Even though the Chang family was monetarily secure, they still had many emotional troubles and many times didn’t know how they would make it. As the family went through this troublesome process, Michelle thought about what it would be like for a family with both limited money as well as limited support. She discovered that it would be nearly impossible and knew that one way she could help would be to extend There With Care to the Bay Area. She soon did so and now it is burgeoning. I became interested in There With Care when my project partner mentioned the organization’s pur-pose. The creator of the Bay Area chapter, Michelle, is overly warm and nice and never fails to make me feel welcome. Throughout this process, I hoped to uncover the true emotional aspects critical illness. I also hoped to uncover the details on insurance and health care and how these affect families. One particular family There With Care serves is the Bogoyo Family. The youngest daughter, Bailey, was diagnosed with Leukemia in September of 2012. The family immensely struggled both monetarily and emotionally until There With Care stepped in and provided services for them. For example, There With Care has given the family gas gift cards to help pay for their gas used to drive to the hospital everyday. Around Christmastime, There With Care gave the Bogoyo Family many gifts to make sure the children would be receiving presents. These extremely generous actions helped and continue to help the Bogoyo Family get through this very tough time.

Chapter 1: From Delivering Groceries to Walking Dogs So what exactly is There With Care? There With Care is an organization founded in Boulder Colorado, in (year) by a woman whose husband was diagnosed with advanced colon cancer. The organization’s beginning goal was to provide support and help to families with critically ill children. Because having a critically ill child puts such a large burden on a family, the organization helps relieve this burden by doing anything possible the fam-ily might need. Years later, after the branch in Colorado was flourishing, a branch in the Bay Area was started. The creator of the Bay Area chapter, Michelle Chang, was inspired to help when her child was diagnosed with a rare form of eye cancer. Michelle says, “The way that I was inspired to start There With Care is that I have two children, a five year old daughter Christine and a seven year old son, Alex and they’re great. Christine when she was six weeks old was diagnosed with Retina Blastoma, a rare form of eye cancer and went through two years of chemotherapy. And while we were going through that, although it was incredibly stressful for us even with our resources the fact that we were local and we had family and friends nearby who could help us, we saw so many families in the hospital that just had no help whatsoever and the stress that they were going through inspired me to help and give back after we were done caring for Christine, who is doing great now.”

Containers for clothing storage

So how did Michelle decide what these families most needed? Was it a place to stay, was it a job, was it food? What exactly would they begin to do here in the Bay Area? The branch in the Bay Area soon came to learn what each individual family’s needs were. “We have done things, our volunteers have walked dogs for families, we have done child care in waiting rooms at the hospital, we’ve decorated Christmas trees in hospital rooms for families who are there over the holidays and who cel-ebrate Christmas, we bring groceries, which is a huge need. We say that every family is unique, but there are certain universal needs, and one of these is food and the stress about figuring out where are you going to get your groceries from.” Imagine having a sick child in the hospital and having most of your income going to that child.

How would you buy food? Moreover, how would you buy food that you believed would help heal the child and not make them worse? You would probably not come home with a Twix bar, a bag of Cheetos, and Kraft mac n’ cheese for your family. Most likely, you would want to feed your child the most nutritious, wholesome food available; like organic broccoli, whole wheat pasta, and organic pasta sauce. How-ever, as we all know, this food is significantly more expensive. So what do you do? Buy the less expensive, bad food or splurge or the more expensive wholesome food that you probably cannot afford? There With Care purchases and delivers whole-some, healthy grocery items to help all families stay healthy. This alone relieves a huge burden felt on many families with a critically ill child.

“Critical illness is nondiscriminating, it can happen to anyone, which I have found out hand is absolutely true. And so your life changes on a dime, things that normally don’t take a second thought, you know, how to get a sibling to their baseball practice, how to get another sibling to school, or to a girl scout meeting.” -Michelle Chang

“Critical illness is nondiscriminating, it can happen to anyone, which I have found out hand is absolutely true. And so your life changes on a dime, things that normally don’t take a second thought, you know, how to get a sibling to their baseball practice, how to get another sibling to school, or to a girl scout meeting.” -Michelle Chang

There With Care’s First family served in the Bay Area

After a volunteer purchases the grocery items, he or she brings them to the There With Care facilities and puts them in the refrigerator for stor-age. After this, a volunteer comes to put everything together to prepare to deliver it to the family. The typical weekly grocery list would have basic staples like whole wheat pasta, fresh fruit and vegetables, and of course a special treat like chocolate bars. After all, who doesn’t like chocolate? After the grocery bag is assembled, a volunteer drops it off at the family’s resi-dence. Whether it is the Ronald McDonald house, the hospital, or the fam-ily’s home, the volunteer will personally deliver it to them to assure that the family will have something good to eat. Wouldn’t everyone want their groceries paid for and hand delivered to them? Even though this is one huge help to the family, the family still usually needs additional help during the week with a multitude of activities including walking the dog, picking up siblings from school, and other basic daily help.

Chapter 2So our impeccable insurance isn’t so great?Shouldn’t we by now have perfected our healthcare system to the point that everyone should be able to fincancially survive in times of great need? You would hope that this would be true, but unfor-tunately it is not. As Dr. Blair Halliday explains, health care many times does not have it right, but physicians do. “I think as physi-cians where we get a little bit concerned about the government is when they start making decisions on a very individual basis, saying you get this, you don’t get that. That makes us a little bit nervous because we feel as physicians that we have a better understanding of what that specific patient needs and we in general get a little bit concerned when government’s making those individual decisions.” Similarly, the government should not be able to determine the cost of cancer treatment purely off of what disease and individual is di-agnosed with. Imagine at the end of the month looking at a large hospital bill, attempting to dissect every last piece of it to determine how it became so enormously long.

You see 100 charges for a pill that costs $1.50 each. Your eyes then glaze down to a $17 charge for equipment to get your blood drawn. Then you see a charge for $84 for a standard saline solution. This list goes on and on until you realize that you can’t keep up with it any-more. Did you know that the hospital significantly increases the price for profit? Or that the same pill you were charged $1.50 each for you could buy on Amazon for $1.49 for a pack of 100? (Brill). That you could get a liter bag of saline solution for $5.16 online rather than the $84 you spent in the hospital? Odds are, you wouldn’t realize this, and most of all, you wouldn’t exactly care given that you are willing to do anything to keep your precious child alive. So we wonder why we need programs like There With Care to help out.

Cancer is a non-discriminatory disease that could happen to any fam-ily. Whether you are a Walmart employee working to make the bare minimum amount of money your family needs to survive or a success-ful entrepreneur in the Bay Area, you have an equal chance. According to Michelle Chang, “critical illness is nondiscriminating, it can happen to anyone, which I have found out first hand is absolutely true. And so your life changes on a dime, things that normally don’t take a second thought, you know, how to get a sibling to their baseball practice, how to get another sibling to school, or to a girl scout meeting. Those things that usually are easy to manage suddenly become really stressful and really difficult to handle, especially when you’re worried about a child who’s critically ill in the hospital.” So amongst all of this economic chaos you face, you also face many psychological burdens.

Within There With Care’s Bay Area Branch, many of the patients receive treat-ment at the Lucile Packard Children’s Hospital. Because this hospital has so many great success stories, many people prefer to receive care here than other hospitals throughout California and even the United States. Carlotta Bogoyo, a mother of a pa-tient who receives treatment at LPCH, describes how she decided to send her daugh-ter there for treatment. “Actually, we were referred to Lucille Packard and I think we did make a right decision because they asked us if we wanted to get transferred to Lucille Packard and it was, I’ve heard about, good things about Lucille Packard, it’s really nice.” However, this comes with a cost. For example, the hospital uses many ex-perimental methods to attempt to cure it’s patients. Because these are experimental and many times not proven to have a high enough success rate, insurance doesn’t cover them. These procedures and the medicine used are extremely expensive and the family must find a way to pay for them. Even if an individual decides not to re-ceive an experimental treatment, non-experimental treatments at Lucile Packard Children’s Hospital still cost significantly more than other hospitals. For example, a kidney transplant without a pancreas transplant costs $53,600-$75,000 at LPCH, which is 97% more expensive than the national average price (vimo.com). If you were under the poverty line, how would you be able to afford paying for regular surgery let alone one a surgery at one of the most expensive hospitals in California?

It all comes down to what type of health insurance you have.

So why is paying for surgery such a problem? Shouldn’t everyone be able to have a way to keep their child alive if he or she gets sick? The

answer to this question is yes, everyone should be able to. The unfortu-nate truth to it however is that many people cannot. What do you think could be a solution for this? Don’t you think universal health care would work? If this would give everyone free health care, why don’t we have it? There is no specific answer to this and there will probably never be one. However, President Obama is working on a system attempting to make healthcare available to all citizens of the United States. Many of the es-sential aspects of this however have not been laid out and even health care professionals don’t know what will happen. “Well part of the answer

to that question is we don’t know yet because it’s a good example of the devils and the details and a lot of the details on Obamacare have not been worked out yet and there’s a whole lot of uncertainty in the healthcare industry among doctors, hospitals, and nurses as to how it’s all going to work” (Halliday). While this important system is being worked out, struggling patients must wait to see what can be to favor

for them.

Summing Up The Money For Surgery

Before we gain a strong opinion either way, we must understand the different types of health care. There are three different sys-tems: single payer, two-tier, and insurance mandate. To make it short and sweet lets play a matching game where we decide which defginition goes with which system type.•Here are your choices: Single Player (A), Two-tier (B), Insurance

Mandate (C)

1. The government provides insurance for all residents and pays all health care expenses except for copays and coinsurance. Pro-viders may be public, private, or a combination of both.

2. The government states that all citizens purchase insurance, whether from private, public, or non-profit insurers.

3. The government provides catastrophic or minimum insurance coverage for all residents while allowing the purchase of addi-tional voluntary insurance or fee-for service care when desired.

If you answered 1) A 2) C and 3) B you are correct. Within these systems are more narrowed in categories which we don’t have to worry about. The most important aspect is that some countries like Canada and United Kingdom have free health care. The United States has decided against this and has a very complicated system that allows for different people to be categorized under certain healthcare plans. Because many times these healthcare plans aren’t enough, we have programs like There With Care to help. Luckily this program can greatly relieve a part of the monetary bur-den put upon sick families.

Chapter 4: They’re Really There

Many times you hear of organizations, know their mission state-ments, and even know exactly what they do but have no specific ex-amples of who you’ve seen affected by it. So far we know that There With Care helps families in any way possible because health care policies are not able to do so. The Bogoyo family is just one example whose life has been permanently altered by their daughter, Bailey’s, diagnosis of Leukemia in September of 2012. Carlotta, the mother, describes the process of fidiscovering her daughter’s sickness as: “She was 4 years old and her side effects were she was very pale, fatigued, and I thought it was because she was sick for about, a few weeks and I thought you know from medication that made her feel tired, sleepy. And then one day she just looked so pale that she didn’t look right so I just took her to her doctor. That’s when we found out.”

Imagine going from one day having perfect, healthy children to the next discovering that your youngest daughter has Leukemia. Try thinking of words to describe this. Crushing, heartbreaking, cruel? How does one even come to terms with this? All of a sudden, it’s no longer dropping your children off at the bus stop every morning, leaving for work, and coming home later that evening to sit down to a nice dinner. It’s bru-tal, nonstop care for your sick child. Your schedule would probably be something more like this:

3:00 am Wake up to your child’s crying due to pain.3:00-4:00 am Attempt to relieve this pain by giving your child a strong drug to put him or her back to sleep.6:00 am Wake up partially out of stress and partially out of the fact that you have to get your other children up, fed breakfast, and out to school.7:00 am Attempt to help your sick child up from bed and try to feed them anything they are willing to eat. However, due to the chemotherapy your child has a surpressed appetite and refuses to eat anything 7:30 am Continue to try to feed your sick child while packing your other children’s lunches and getting them out the door.

I think you understand now that having a child with a critical sickness would be anything but simple. Not only do you have to tend to your sick child’s every need, but you also have to be sure to give just enough attention to your other children. Furthermore, what happens if your other children don’t under-stand? Carlotta explains how Bailey’s siblings have adapted to her sickness and how they’re dealing with it, “Um, I’ve never really spoken to them about... but I think... I did, um, well I’ve spoken to my oldest, my oldest daugh-ter and she... I ask her if is there anything she wants to ask me to tell her and she tells me, it’s okay mommy, you don’t have to worry about me. I mean, I don’t want to put more pressure or stress on you. That’s what she said, so I think she understands.” Now put yourself in the perspective of a sibling of a cancer patient. Naturally, as a child you crave at-tention from your parents. What would happen if this was all of a sudden pulled away from you and you no longer could receive it? Even worse, how would you feel if this attention was being pulled away from you because of another sibling’s sick-ness? This emotion is almost indescribable and no child should have to endure this. However, critical illnesses like cancer heap this pressure upon way too many families. In the United States in 2007, approximately 10,400 children under age 15 were diagnosed with cancer (cancer.gov).

The only thing that money wise attempts to take away some of the mon-etary burden put upon these families is health care.

However, how much stress does this really relieve?

Unfortunately, many times it puts on more stress. Now not only does the family have to focus on curing their sick child, but also insurance claims and dealing with complicated insurance policies. Carlotta explains that she believes the system should be changed, saying, “Like, what Bailey has. She has Leukemia. I mean, maybe it is hard to do, with different process-ing itself, but it’s really stressful. I mean, like I already said, it’s already stress... thinking about her health and we have to go through so many process, we don’t have time to give a call back or “I didn’t get an answer yet”, or it takes a while, um it takes a few months actually. But with her, with the disability, with her disability, it’s, I think it’s just not right. It’s not right.”

“I think it’s just not right. It’s not right.”

Imagine having the stress of a sick child on your hands and added to that having to figure out who will pay your thousands and thousands of dollars in health bills. Like Carlotta said, when a child has a sickness there’s no time for waiting to get an answer from a healthcare company. The child needs the medicine immediately, and even will sometimes determine the most sever aspect of a sick-ness, life or death. Because it is so complicated to do this through healthcare, organizations like There With Care must step in to fill the void. Carlotta reflects gratefully on the organization saying, “Wow, it’s amazing they’re so help-ful, I mean it’s like, it’s my convenience actually, it’s really helpful, I mean at times I just feel like it’s too much al-ready, but you know, they’re there.” Fortunately, There With Care can truly be there to assist these families.

“Wow, it’s amazing they’re so helpful, I mean it’s like, it’s my convenience actually, it’s really

helpful, I mean at times I just feel like it’s too much already, but you

know, they’re there.”Carlotta Bogoyo

Throughout life, we never know what will come upon us. For some people it’s an amazing surprise like winning the lottery, and for others it’s a major drawback like a critical disease. These harsh critical diseases can attack at anytime and completely shatter a family. They are unexpected and altering and cut many people’s lives way too short. As what happened with the Desserich family, a family whose daughter (Elena) was diagnosed with cancer, the disease attacks at all parts of the body. In Elena’s case, her brain. Her father describes this situation as, “The sign language has returned. With Elena’s voice becoming increasingly congested and her vocal ability decreasing, she is back to resorting to hand signals and spelling” (134 Desserich). These diseases have no guaranteed way of being restricted and many times end up defeating their victims. Because the United States’ health-care system has no way of stopping financial problems, organizations like There With Care must step in. Whether it is paying for gas, food, or clothing, There With Care is there to help and provide support. After all, who wouldn’t appreciate support during a time of such great need?

Works CitedBrill, Steven. “Bitter Pill.” Time 4 Mar. 2013: 17-55. Print.

Chang, Michelle. “There With Care.” Personal interview. 3 Mar. 2013.

“Childhood Cancers.” National Cancer Institute. National Institutes of Health, n.d. Web. 25 Mar.

2013.

Desserich, Brooke, and Keith Desserich. Notes Left behind. New York: Wil-liam Morrow, 2009.

Print.

“Fertility Issues in Childhood Cancer Treatment.” Lucile Packard Children’s Hospital, n.d. Web. 5 Mar. 2013.

Halliday, Blair. “Health Care.” Personal interview. 5 Mar. 2013.

“Lucile S Packard Children S Hospital.” Affordable Health Insurance. N.p., n.d. Web. 21 Mar.

2013.

“True Cost.” True Cost Analyzing Our Economy Government Policy and Society through the Lens of Costbenefit. Truecoastblog.com, 9 Aug. 2009.

Web. 21 Mar. 2013.