Living with Histio

Advertisements

Thankful My Child Can Walk & So Much More

Last year at this time I remember being thankful that I was able to buy a house just a few months before, having great friends who helped me with my house, having two awesome kids who were believed to be healthy and my having a job I enjoy.  The kids and I were so excited about Christmas in the house and didn’t even make it to Thanksgiving before we decorated. We were thankful for a few other life changing events as well. It had been a great year.

This year, a week before Thanksgiving, I am anxious to put up my holiday decorations, but more than anything, I am thankful my son can walk and is going to be okay.  Joey was diagnosed with LCH in April. This cancer-like disease ate away at his hip bone causing extreme leg pain, a hip bone graft, time in a wheel chair, time with a walker, a lot of physical therapy and a lot of heart ache for our family. As I write in the previous blogs, it is a very rare disease effecting only five in one million. I had never heard of it and neither did anyone I knew.

Joey’s doctors were very optimistic when they would talk to us about it. However, they would repeatedly tell me that they couldn’t promise great results. I felt truly helpless. It wasn’t until a week ago when I read an email from one of the doctors (we talk a lot via email about Joey’s diagnosis – Children’s Hospital Medical Center is incredible), that I truly realized that there was a real possibility that my son would never walk again. “…were very worried that the hip joint cartilage might have been damaged by the Histiocytosis, but that risk is getting smaller as Joey recovers. It is great to hear that he is walking well,” the doctor stated in his email. I knew the entire time that not walking was a possibility but I never let myself consider it. In fact, I never even told Joey that was a possibility.

At the diagnosis and months following they explained over and over that the LCH could attack other parts of the body. Two weeks after surgery he almost ended up in a Spica Cast. An amazing nurse stopped that from happening and advocated for Joey better than I ever could have at that point. She insisted more tests be done. That’s when they found out there was nerve damage in the leg. My son would lay in bed screaming bloody murder even after high doses of morphine. He spent a week in the hospital. The pain eventually eased up after having acupuncture.

Joey wasn’t able to finish the last two months of the fourth grade but luckily he is a good student and was able to move on to the fifth grade. The school administration and his teacher were incredible through this time and made sure we had everything needed for him to pass the fourth grade.

Our pediatrician and former orthopedic have learned about LCH as a result of Joey’s story. Hopefully they will never have another patient with Histio but if they do, they will be more likely to diagnosis it. It was just me and Joey when we received the diagnosis at Children’s. I broke down at one point (Joey was not around) and had a hard time comprehending everything I was being told. As a result of our story and others, Children’s has a new policy on how they give difficult news. A child life advocate is with the family during the diagnosis.

I have met some incredible people through an online Histio support group. Unfortunately, some of them have lost children to this disease but we have been there for each other through it all.

My 14-year-old nephew Raymond became mine and Joey’s rock. He gave up a lot of his summer to help us.  He would entertain Joey by playing video games and spending time with him. He would allow me to get out of the house or get stuff done around the house. My entire family – parents, siblings, nieces, nephews, cousins, aunts, uncles, etc – chipped in. My mother stopped working for several months in order to help us get through everything. My friends, and Joey’s, were also amazing.

My daughter Andi was also astonishing through this whole thing. Her life had been turned upside down. She was on her own for so much since I wasn’t able to leave Joey alone. She bounced around from grandparent to grandparent while I stayed in the hospital with Joey. She was so worried about her baby brother all the time. But she stood strong and dealt with it all like a champ.

Through all of this, I have also become somewhat of an advocate for Histio. Joey and I were able to be part of a Histio Awareness story and I had the opportunity to write a story about being an advocate for your child for Cincinnati Family Magazine.

So this November, I am still thankful for my house, my job, my family and my friends but I am also thankful for so much more. I am thankful that my son can walk. I am thankful for strengthened relationships with my nephew, Andi and other family members. I am thankful for the Histio families and Children’s Hospital doctors and staff that I have met along the way. I am thankful for Nurse Kelly, who stood up to everyone and made sure Joey got the care he needed. I am thankful to be part of such an incredible school district who did everything they could to help us. I am thankful for acupuncture. I am thankful for technology and bone grafts. I am thankful my story has helped changed policies at the hospital. I am thankful for being able to advocate for Histio awareness. More than anything, I am thankful that my son is okay and that my family has survived this and is stronger than ever.

As Joey loves to say: “When life gives you lemonade, make lemons and life will be all like whaaat?” – Phil Dunphy, Modern Family.

So what are you thankful for this year?

Dealing with Loss & Tragedy

Before this fall, neither of my children had ever even been to a funeral or really experienced death at all. My grandmother passed away a few years ago but since my children were very young and hadn’t seen her in a while, I decided I would not take them to the funeral.  The most death my children had experienced was when their grandparents’ dogs died. That was emotional enough for my children.

Earlier this year, my 10-year-old son Joey was diagnosed with LCH, a rare cancer-like disease. He was treated at Cincinnati Children’s Hospital with a hip bone graph and steroids. His outlook is very good. However, during the process, we met families from all over the United States at Children’s and through an online support group. We became very close, emotionally, to a family from Las Vegas. My son and I were able to meet the mother of a 4-year-old girl who was fighting for her life. Baby Jae was beautiful and strong. I would read her updates daily and find so much hope. My children and I would talk about her around the dinner table and pray for her. When driving under a train, my children would wish that Jae would get better. We have always closed our eyes, touched the roof of the car and made a wish when driving under a train.

Jae’s fight became a daily conversation in our home. My kids would make cards for her and ask about her all the time. Suddenly, Jae worsened and her fight ended in late October. Although we had never met Jae personally, we felt like we knew her for her entire life. We had seen hundreds of photos of her, listened to her story as we had lunch with her mom, messaged with her mother and followed Facebook posts about her daily. It was devastating to get the news. We could not go to the funeral because it is in Vegas. However, balloons are being released in honor of Jae at the funeral later today. My children are going to do the same thing in our hometown. This our way of recognizing our loss and letting the family know we are with them in spirit.

Also in October, my daughter’s friend lost her father. Emily’s dad passed away in his sleep. It’s assumed that he had a heart attack. Emily’s younger brother and my son Joey had played here and there over the years. Emily’s mom and I had been co Girl Scout leaders, exercise buddies, in carpools together and I definitely consider her a friend. Andi and Emily are in clubs together and have been in school together since kindergarten. They are now eighth graders. I had been out of town the weekend he passed. Andi called me on my cell as I was boarding my plane to come home and gave me the news. I broke down for a moment as my heart ached for the family, pulled it together and got on the plane. It’s all I could think of the entire flight. Once home I found out how much this had affected my daughter emotionally. Her friend lost her father suddenly. It made Andi think of mortality, her own parents and how Emily and her two siblings would grow up without their dad there every day.

This was my daughter’s first funeral. Andi asked me lots of questions leading up to the funeral. She wanted to know what exactly happens, who is there, if you see the deceased, etc. She wanted to go to show support for her friend but was also scared. I explained as much as I could. We hugged the mother and Emily and told them how sorry we were. We made sure they both knew we are here for them. We both shed tears and I took Andi back to school. Later that day Andi and I discussed the funeral. She said it wasn’t exactly what she expected although she didn’t know what to expect. She said in a way it seemed surreal and she just wanted to take the family’s pain away.

Last week another father in our community passed away. I have had conversations with all of the family members but am not close to them. However, my son Joey is in class with their youngest daughter and considers her a friend. I told him on Sunday that Marcy had lost her father. He sat there in shock. He didn’t know what to say or how to feel. After a few minutes he hugged me real tight and told me he loved me. He’s asked me if I know how Marcy is doing but we haven’t discussed it much more than that. I can tell it is bothering him.

Andi asked me the other day why so much tragedy has happened in our community lately also reminding me of a teenage boy who was hit by a car this summer and, although is doing incredible, has a long road ahead of him. And of course her own brother’s diagnosis this spring was scary for her and all of us.

I really couldn’t answer the question. Why does tragedy seem to hit a community all at once? I should state that I live in a small town with a very tight knit community. We all take care of each other however we can, whether that be driving each other’s kids, meals, watching kids and just being there for one another. So why does it hit all at once? How do we explain that question to our children? How do we help them not worry that they may lose a parent at any second? How do we help these families dealing with these losses? This article might help some.

Other than keeping an open line of communication with our kids, hugging them a lot and repeatedly telling them we love them, I really don’t know the answers. I would love to hear your opinions though.

In memory of the families who have suffered these losses and tragedies.

Note: I did change the names of the children who lost their fathers.

I Am Not a Librarian

I work at a library but I am not a librarian. I do not know the Dewey Decimal System, get to read fun books to cute little kids, help patrons find materials, teach people to use computers, read at my desk between busy spurts so that I am up on the latest books, schedule live bands, host fun parties or research my family tree. Now let me be clear, that is not all librarians do. Not even close. They work hard to get a masters degree, continue their education, learn the Dewey Decimal System, plan programs that their patrons will enjoy, help people find exactly what they are looking for and much more.

However, every time I tell someone I work for a public library, they assume that I’m a librarian. They think I must wear glasses (well I do have glasses), wear my hair in a bun, wear a kitty cat sweater vest and tell everyone to hush. They assume that I read books and play with little kids all day. In fact, my son, now 10, thought that for several years. He would tell his friends and teachers “my mommy goes to work to read.”

I am the public relations coordinator. When my job involves reading, it usually includes news articles so I can keep up with what is going on the community and books about social media as a PR tool, best practices and other materials to help me be better at my job. My office is not actually in a library so I don’t get to see the little kids picking books or enjoying storytime. I can’t just browse the shelves on a break to pick out the coolest games, latest movies or classic books I want to get lost in.

I miss being in a branch but am reminded that I didn’t choose a career that involves staying up on the latest books, hanging with kids at storytime, working the reference or circulation desk. I chose a different type of customer service. I’m more behind the scenes holding a support staff position. My role is to promote the programs, materials and services offered at the Library. I have promotional items designed, work with the media, plan and promote fundraising events, take photos, oversee social media, work with traditional media, do a lot of paperwork and much more. I want our library to succeed, which means having high numbers at programs like storytime and supporting our staff.

Since I do not work in the public setting, my position does have a little more flexibility. I am able to volunteer to work at larger library programs, which I love doing. I can pop in on a storytime when I have a few minutes. I have the opportunity to get to know coworkers throughout the system and assist patrons through social media.

I was at a party last night and when I answered the question “Where do you work?” I was immediately asked if I knew the Dewey Decimal System as another friend hollered out “she’s a librarian.” I’m not sure why my friends find this so funny but I’m glad I can entertain them. I am also glad that my son finally believes that I don’t go to work to read all day (how cool of a job would that be!).

Do your friends and family have any misconceptions about your job? Is there something you wish you could do at your job that others get to do?  Share your thoughts here.

What I would do Differently… If I Ever Date Again

I have found myself once again inspired by Single Dad Laughing’s blog. He has done a 2-part post on ways he blew his marriage. You can find the first 16 ways here. You can find the next 15 here. These two posts went extremely viral and people commented like crazy.  I read both and as a woman with a divorce and a broken engagement behind her, I thought they were fantastic.  Both posts were heartfelt, honest and courageous. It had to be so hard for Dan, the author, to share his most inner thoughts like this.

Several men commented saying they would love to see a woman write such an honest post. I’m not sure if I can put myself out there quite like Dan did but I’m willing to take a stab at it. I know I wasn’t perfect in my marriage or my engagement. I think that I get better at relationships as I get older. I realize that might sound crazy considering I’m getting ready to turn 38 and still single but I really do think I’m better at relationships. I am honest with myself and the other person, I don’t continue dating someone just so I’m not alone, I realize bad situations and I’m much more confident.

There are a lot of things that Dan mentioned that he did wrong… many women do the same things so I don’t want this to just be a repeat of his list. For that reason, mine probably won’t be as long; however, I might use some of the same items but from a different perspective. I’m also not going to steal his exact writing style. I will be talking about things that I could have done differently in the two relationships that have had the most impact on me – my marriage to T and my engagement to B. I do want to be clear; I don’t think T or B were the right men for me to spend my life with. So my post is a little different than Single Dad Laughing’s. I guess mine is a little more about… well, let’s find out:

1.       Don’t marry young

I should have never gotten married at 20. If you are not old enough to have a drink at your own reception or rent a car in your name, you probably are not old enough to make the decision to spend the rest of your life with someone. You need to figure out who you are before you give yourself to someone else.

2.       Know that fighting is not passion

T and I fought a lot when we were dating. Most people   knew it. My friends would even ask why I was with     someone who I fought so much with. At 19, I would explain that it was because we were so passionate about each other. Passion doesn’t really mean fighting so now I would find a different way to show my passion, which would not include whipping a roll of quarters so hard through the house that it was stuck behind a wall. If I ever date anyone else, I would recognize that fighting all the time is not healthy and decide whether the relationship was right for me.

3.       Be confident

In my teen years and early 20’s I was very insecure. Most people who knew me then are probably surprised by that statement. I always came off strong, confident and as a girl who fought for what she believed in. I fought for everything but myself. Honestly, confidence is sexy and most men will like that. If they don’t like you being confident then they probably aren’t the right man. I also learned that an insecure girl shouldn’t be in a serious relationship, let alone getting married. If I am ever to date anyone else, I will examine my confidence and self-esteem level. If it’s not where I think it should be, I will realize it’s not the relationship for me (or him).

4.       Don’t be cocky

I was very insecure when I met T, however, I was a little cocky when I met B. I was much older, was in a good place emotionally, had a good job and wasn’t looking for Mr. Right. Well, I guess that’s good because I found Mr. Wrong. I was just out with friends the night we met. I wasn’t expecting to meet anyone and even told him in a very cocky way that I didn’t expect anything to come of it. I knew that he liked me more than I liked him in the beginning and I think I made it clear that I knew. If I ever date anyone else, I will appreciate someone’s admiration for me, even if it’s more than I’m able to give at that point, instead of being cocky about it.

5.       Be flexible

B and I had been dating a few weeks when I told him flat out that I’d be difficult to date. At that point, I was so busy with kids, enjoying being with my friends and was very aware of the fact that I’m an over planner and overachiever. I probably had the next six months of my life already scheduled when I met him. Now in my defense, I stopped scheduling so far in advance once we met but I wanted to keep my commitments. I was and am also the Girl Scout Leader and the PA for my daughter’s soccer team. I wasn’t willing to give up my volunteerism, miss school events or soccer games or give up anything else. I also don’t think I should have been asked to miss or give up anything that involves my kids. However, my time was extremely limited, which is hard in a new relationship, and I’m sure I could have freed up my schedule some in order to spend more time with him. If I ever date anyone else, I will be more flexible with my schedule.

6.       Truly listen

I have a degree in journalism and communication. It shouldn’t be difficult for me to listen to someone, I mean truly listen, and realize when they aren’t saying everything. But it was. Well, maybe it was because I didn’t really want to hear what was being said. Between the two of us, B and I have four kids. His two boys are about the same ages as my daughter and son. I was renting an apartment and B owned a small two bedroom, one bath home that needed a lot of work. There was a laundry room that he also threw a bed in but that doesn’t really count as a third bedroom. At first, B didn’t do any work to get his house ready to sell saying he didn’t have any money. He honestly didn’t have any money but some of the stuff was labor he could do himself. Eventually I ended up paying with my money for people to work on the house and I did a lot of labor myself. My kids even helped. I’m very practical and was just trying to get it done so we could start our lives together. He fought every step of the way. He didn’t want the fire place painted, the closets cleaned out or the kids’ room organized. It made no sense to me. He constantly complained about having it clean for showings but would tell me how he couldn’t wait to marry me. It wasn’t until the end of our relationship that he finally flat out said that he didn’t want to sell his house and just wanted me and the kids to move in there. He worked hard for that house and wasn’t ready to give that up. I was not willing to move in that tiny house with four kids and two adults but a lot of arguments could have been avoided if I had truly listened earlier on. If I ever date anyone else, I will make a point to truly listen and try to be more aware of underlying issues.

7.       Talk instead of becoming resentful

I often did not speak up in any of my relationships. I would hold things in to avoid disagreements, which only resulted in me being resentful. Dan mentions in his posts that he should have never stopped holding his wife’s hand and should have shown affection and not just because he was trying to have sex.  I started withholding sex (oh I hope my parents, aunts, brothers, cousins and kids are not reading this) because I was not getting the affection and hand holding I needed. If I would have just spoken up, when it wasn’t at that moment that he wanted to get intimate, I may have avoided a lot of arguments. If I am ever to get married again (because I would never have sex without getting married; right mom?), I would remind him that I needed that attention more often than at bed time. I would also show him more affection.

8.       Do not let exhaustion get in the way of intimacy

Just so you know, I am really uncomfortable talking about intimacy of any kind. Anyway, I would often be so tired from work, kids, sports, etc. that the idea of being intimate at bedtime was the last thing on my mind. I knew that he often felt rejected but I let my LOVE for sleep get in the way. If I was ever to get married again (because I would never be intimate with someone without getting married; right dad?), I would try to head to bed earlier, drink an extra cup of coffee or get a quick nap in at some point in the day. Or I would just suck it up and get a little less sleep from time to time.

9.       Do not be bullied or bully him

I think most of us never think of ourselves as being a bully but it does happen. We want something really bad so we can up with ways to manipulate our significant other into doing whatever it is or giving it to us. I know I have been guilty of it. He would often tell me “but it’s important to me. How can you say no if it’s important to me?” This included things like wanting me to change my last name, cancel things with my friends who were in town because he wanted me to do something, missing my own events for his work events, etc.  FYI: there is a difference between being important and being important to you. If I were to ever date anyone again, I would be strong enough to discuss how I feel bullied by those kinds of statements and I would not use manipulation to get my way.

10.   Be honest with yourself and him

There was a point where I knew our relationship was falling apart. I knew he wasn’t being honest with me about finances, kid issues and more. I would ask if everything was okay, he’d say yes and I’d accept that. I knew this wasn’t the case. I also knew that I wasn’t okay. At one point I even told him I’d consider moving in to his tiny run-down home even though I would have never actually done that. I just told him because I wanted to stop fighting and didn’t want another failed relationship. I even told him I wanted to change the location of the wedding (from my parents’ backyard to??) in hopes of postponing the date. I don’t know why I didn’t just say I needed more time or whatever was on my mind. I guess I was trying to not hurt his feelings but everyone was hurt in the end. If I ever date anyone again, I will be honest with myself and him because no wins when you lie, even if you think you are telling the truth.

11.   Keep the surprises coming

When relationships are new and exciting, both people tend to surprise each other with little getaways, flowers, cute little outfits, candle lit dinners and much more. As the relationship becomes “comfortable,” the surprise factor seems to stop or become a lot less often. If I were to ever date anyone again, I would make a point to surprise them regularly with little gifts, cute little outfits, dinners, trips and other cool stuff because it keeps things interesting and shows that you are thinking of him.

12.   Support each other

B worked at a job where he had A LOT of events. I went to a lot of them but there were things I missed. Although I don’t think I could have gone to every single thing, I needed to prioritize better. He didn’t seem to care as much about certain ones as he did others. I should have been at the ones that were really important to him. On that same note, he should have been at things that were important to me, which he rarely was. I think in a way I decided if you can’t go to my things then I’m going to skip the stuff important to you. If I ever date anyone again, I will prioritize and support them in work and family life. I will also make it clear that it’s important that he shows me support as well.

13.   Rub his damn feet

This has to sound nuts but in three of my long-term relationships, I have had fights over feet rubbing. I love to have my feet and shoulders rubbed. However, I HATE to touch feet. I seriously have a phobia. I think men’s feet are so gross. I know women’s feet can be nasty too but not mine. I take care of mine by getting pedicures once a month. I seriously don’t want to rub anyone’s feet but my goodness if it’s going to avoid arguments; I need to get over my phobia. If I ever date anyone again, I will invest in a lot of brand new socks and then ask the guy to wear them while I rub his feet.

I could go on and on I’m sure but I’m going to stop my list here. Again, I don’t regret ending these relationships; however, I could have been a better partner. If we are going to be in a relationship, we should be considerate, caring, supportive and just plain nice to each other. If we can’t be these things, we probably need to end it. Actually, after writing this, I’m a little disappointed in myself. I think my next post might be “Things I have done Right.”

What do you think of my post? What did I miss? Is there something you wish you would have done differently in the past or plan to do differently in the future?

Written by: Gina Holt

P.S. Check out Single Dad Laughing. Hilarious! And he did a much better job with this than I did.