Drama

I don’t get any pleasure out of drama. I vividly remember a few short years ago standing in my kitchen and feeling so thankful for such a peaceful, uneventful life. Trip was 1 and we were unaware of any possible disease. Nothing much ever happened to us and it was wonderful… smooth sailing. Not now. Seems like we are in the middle of a soap opera. I’ve been a General Hopsital fan for 25 years. That’s where I prefer my drama – daytime TV. Recently, the days of my life (no pun intended) could make for some good GH episodes sans the love triangles and the fact that most characters on that show are packing heat. Heck, we even live many days in the hospital. Where is Dr. Drake with our miracle? Where is Jason Morgan? (Okay, the latter question is only because it can’t hurt to have some nice eye candy while in the hospital. Don’t judge me. Besides, Colson doesn’t read this.)

We checked into the hospital yesterday by noon. Trip started chemo at 9:00 p.m. last night, which is ridiculous on so many levels. I don’t even have the energy to type the multiple reasons for the delay. I just know that delay will push us into staying a 3rd night because of the timing of his blood work and testing for methotrexate levels. Trip cried the minute he woke up on Thursday because he didn’t want to come to the hospital. He keeps asking when we can leave and why is this taking so long. We haven’t even been here 24 hours. He did do much better getting his port accessed this time. Gaky has been here helping me (thank the sweet heavens above). She is able to shift Trip’s focus from thinking bad thoughts to things like naming different types of birds or watching trains. I don’t have that talent. Plus, Trip informed us this week that all of this is my fault. The reason we go to the hospital, the reason he has to take yucky medicine, the reason he has to get two shots a day… it’s all my fault. I’m sure he needs a place to put the blame and I’m the easiest target since I’m typically the one “making” him do all of the things he doesn’t want to do. Guess I have to find comfort in the fact that I’m doing this for “his own good” even though I’m not very likeable at the moment.

Trip entertains a lot when we are at the hospital. Sometimes it’s out of frustration and the doctors laugh even though he’s calling them names like “Crocodile Ike” or telling the doctors they aren’t on the “good team”. Last night I was holding him in his bed while we were winding down for the night and the nurse was getting some labs and suddenly he said, “I think I’ll smoke a cigarette when I turn 18.” I said, “WHAAAT DID YOU JUST SAY???” The child always comments on other people smoking and how gross a cigarette on the ground is and now he knows what age he needs to be to buy them??? The nurse died laughing, which put Trip on stage again, but I sat there in shock. First of all, LCH and cigarettes don’t mix. There’s something called pulmonary LCH and since there is a high probability of this disease returning four times in his lifetime, cigarette smoking will only make the chances of beating it harder. Does the fact that I’m panicking to Trip make it all the more interesting to him? Should I ignore it now or start to explain it to him? (I didn’t have any answer last night, so I simply told him I would sit on him if he tried to smoke. Mother-of-the-year right here, people. Watch and learn.)

Then my mind jumps to his diabetes insipidus. What if he wants to go to a friend’s house for a sleepover and feels left out because all he wants do from 6-8 is drink and pee? Do I interrupt the sleepover at 8 to give him a shot? Or if he’s finally on pill form, will he remember to take it or even answer the phone if I call to remind him? Okay, I’m reeling it back in, but this is the stuff I’m contemplating when my child is only 4 and should be going to preschool and playing with his friends without a care in the world. Disease compounds the normal parenting problems. As Kristin, my friend and fellow histio-mom says, it’s time to change my expectations. The thoughts of how life would be and should be constantly have to be adjusted, so maybe it’s best not to have any expectations. She, unfortunately, has had to become an expert at not having any expectations.

Trip had two appointments on Tuesday and was seen separately by a tech and a doctor who hadn’t seen him in a couple of months. They both commented on how great he looks. They thought his skin and eyes were much better than the last time they saw him. That is wonderful and makes me feel great that we are possibly doing something right, but will we ever be able to stop? Will he be a kid that has to stay on chemo indefinitely just to keep this awful disease at bay? I’m stopping myself now before the wheels completely come off.

I’m sure you’ve noticed by now, the time spent in the hospital is free time for my mind to wonder illogically. There wasn’t much sleep last night but there never is in the hospital, so I write to get all of this junk out of my head. The good news is today is a new day, a fresh start, and I’m blessed to be here to experience it.

Aiming for the Positive

Thursday we checked into the hospital for Trip’s 5th round of methotrexate. I’m not sure if he was feeding off my emotional week, but it was the hardest day for him emotionally speaking. Getting his port accessed was a nightmare, most likely related to the last access when the nurse poked him three times until she got it right. He screamed, fought and cried like he did in the beginning of all this mess. I was kicked and hit a few times, which are normally punishable offenses, but I felt like he was being punished enough. It was almost like a year of play therapy was out the window. There were three of us holding him down and he was fighting hard and asking why we are doing this to him and begging for us not to hurt him. The accessing process should take only a few minutes, but when there’s a fighter it takes a little longer but always feels like hours. After that the day went downhill. He did not want to be in the hospital and was begging to go home. I decided to explain a little further about his disease and told him that we need it to leave his body. “The medicine we get here will help us get the disease out of your body. We need to come to the hospital until the disease is gone, “ I tried to explain. While sobbing Trip screams, “Then we’re NEVER going to get out of here!!” I told him that I understand how he feels and that we WILL get this disease out of his body. “Sometimes, it helps to cry – just let it all out. It helps me feel better,” I told him in hopes of persuading him to not hold in what he was feeling. After that there were no words for a long time. I held him like a baby and rocked him for a long time while he cried and I choked back the tears. I watched him and remembered rocking him when he was a baby – a time before we even knew about the existence of this awful disease. How did we get here? Whose life is this?

He slept for a long time after crying. When he woke up he told me he was sorry and when the nurse came in he told her he was sorry too. He has such soft heart when he isn’t trying to protect himself. The night was a little better. He does not like it when the family isn’t “all together”. He was anxious to see his dad. Colson came Friday morning and I left to work and have a much-needed break. I was able to have my breakdown during the 30+ minute drive home.

I went back to the hospital Saturday morning and think the timing of being in the car was uncanny. There was a radio program on about staying positive when you feel anything but positive. I needed to hear it. It reminded me of the importance of finding things to be positive about when it is easier to focus on all that is wrong. I struggle with how to stay positive about the outcome of this battle but not get my hopes up at the same time (usually feelings that surround scans since that’s when the good/bad news comes). I haven’t been able to reconcile the two.

It’s easy for me to tell other people to stay positive when they are facing challenges because I truly believe everything will be okay for them. Why can’t I wholeheartedly believe that for my family? I think back to the beginning of all this when I was determined that Trip would have the initial chemo protocol and it would be the magic solution. A year ago, I thought things would be “normal” by this time. Here we are with a disease that has progressed since the beginning and now have what they consider to be “resistant” disease. It must be some sort of self-protection so I won’t be completely shocked if we do continue to get less than desirable news. It occurred to me that I do have a lot to be positive about regarding Trip and his disease.

I am the mother of an energetic, fun-loving little boy who has fight in him.

I am getting the best treatment for my son.

I am blessed beyond words to have the support of family and friends.

I am determined to remember the good surrounding us instead of what could go wrong. It will take work, but hopefully it will get easier in time. I know there will be hard days and I may or may not be ready for them, so I have the above list to refer to. ☺

There are so many people we know that are facing disease and fighting for their lives or the lives of their children. I guess it’s a sign of getting older?? My heart goes out to the parents who lost their little girl to cancer today; the 3 year old little boy relearning basic skills after a recent bmt; the teenager living out her high-school years fighting cancer and undergoing surgery after surgery; the mom and wife fighting for her life and scared for her family; the dad and husband gearing up for his fast-approaching bmt with so many unknowns; the granddad losing his battle with leukemia… too many to list.

If you’ve made it this far reading my ramblings today I commend you. ☺ I am simply trying to process these chaotic feelings. Hug your kids and spouse tightly and be thankful for the daily trials. Tell your parents and siblings how much you love and appreciate them. Make sure your friends and family know how much they mean to you. Don’t cloud the good in life with the daily minutia. (Not trying to be preachy to anyone but myself here.)

Thank you to all for standing by us on this journey. Even in cyberspace we know you are there and couldn’t be more thankful.

Mixed Emotions

We had a wonderful weekend. Trip had the biggest following at Hike for a Cure. 25 people hiked in honor of him. Over $16,000 was raised for histiocytosis research. Dr. McClain, Trip’s specialist in Houston, was there and spoke about his research and what he hopes to have happen with “Spit for a Cure” which is genetic testing of the families facing hisitocytosis. The weekend was emotional and uplifting. It was humbling to see how much support we have and comforting to be in the presence of others families in the middle of treatment or who have already experienced the success we are so desperately hoping for. We heard stories of triumph and hope and courage. Those remind me to hang on…

… when I feel so crummy because of his MRI results. I’m so sick of words like “minimal improvement” and “subtle change” and “stable disease” and “persistent mass”. I’m ready for words like “large improvement” and “great change” and “no active disease”. When do we get those? I’m tired of waiting and tired of chemo. I’m tired of doctors being satisfied with results that only show the disease as stable. I get it’s good that the disease isn’t growing, but how much of this do we – does Trip – have to take before it’s gone forever? So, with that thinking, it should be needless to say that I’ve had a huge pity party for myself. I wanted to be able to write this entry with a more positive tone, but right now I just need to feel sorry for myself and get it out. Hopefully I’ll feel better and have more perspective after. Maybe I should clean something.

We have wonderful friends who support us with their whole hearts – even the young ones. My precious, generous godson, Cole, walked up to me at the hike with a handful of his saved dollar bills and told me that he wanted to give it for Trip’s disease. I immediately broke down in tears hugging him. Another little friend, Tristyn, told her mom when she was getting tucked into bed after the hike, “Mommy, this was such a wonderful day.” And yet, another little friend, Dylan, jumped into bed last night with Trip’s Histio Warrior sticker on and said, “I love T Ripper!” Those are things that bring me to a puddle of mush but things I will remember forever.

Hard, Easy Days

Trip went in for chemo last Thursday at noon and got out Saturday night around 9:00. It was the quickest in-patient visit we have had. Usually we are there for at least 3 nights. One thing I learned last year that I’m still working on, is to remember that I don’t have to do everything myself when it comes to Trip’s appointments and medical details. You don’t even have to know me well to know that I’m a control freak. Obviously, I cannot control this disease, so I try to control everything involving his illness: appointments, medications, insurance claims, testing, etc. I guess in doing so I somewhat feel in control. This year, with the in-patient visits, I have asked for – or allowed more help. Usually I get Trip checked into the hospital and stay a night and then Colson comes the next nigh to let me go home and rest and then I go back the following morning. Not much happens at night in the hospital other than not getting rest, so I don’t feel like I’m missing much to take a night off to get decent sleep. This last visit, Colson’s schedule was a little crazy and I was behind with work, so he took Trip on Thursday and did all of the things I would normally do to get him settled in and started on the treatment. I stayed home and worked and then went to the hospital on Friday around noon. Other than pacing around the house a few times after they left and having a bit of anxiety, everything went well. I even got caught up on work! The treatment started earlier than it has in the past, which allowed us to be discharged on Saturday night instead of Sunday. Still, Saturday afternoon and night leading up to our discharge was harder than it has ever been. Trip had had it again. I think the 3rd day of the hospital is when he just can’t take it any longer. I’ve noticed it getting worse the more times we go in for treatment. Even though this visit was easier than the others, the last day was still hard on him. So far no side effects! I’m so happy about that. Hopefully the mouth sores won’t present themselves again.

So here we are in the middle of our “easy” week and things should be smooth sailing, right? Sunday I realized that our refrigerator in the garage went out. It usually only houses drinks, but Colson shot a deer last year and recently got it back from the processor. We haven’t eaten any of it and it was all completely thawed. Since Colson was at an extremely important (insert sarcasm) golf tournament, I spent most of the day cooking 15 lbs of deer meat that we will never be able to possibly consume. I don’t even really eat deer unless it is well hidden in food! I do think it was better than being in the hospital another day though.

Last night, I was cooking dinner the lazy way. Instead of getting out the big steamer for a small amount of broccoli, I engineered a stovetop steamer by putting a colander in a pot, but failed to notice the plastic on the colander. Trip and I were playing and I was on the phone, so I wasn’t paying much attention to cooking until flames were covering the stove and threatening our cabinets. I yelled, “Fire! Fire!” and hung up on my dad who was obviously was thinking the worst. Trip ran into the kitchen and was screaming “Fire!” too. I grabbed the fire extinguisher and after fumbling with it for a few seconds put out the fire. I was absolutely stunned with my mouth wide open as particles of debris fell around us. I slowly turned to look at Trip and he turned to me with a look I’ve seen before when he is on a carnival ride and said, “Let’s do that again!” I was still stunned when Colson walked came home two seconds later to the chaos and simply said, “Can we go out to eat?” which we promptly did. We cleaned the mess up when we got back and the house had time to air out. I Googled “what is in a fire extinguisher” because I was worried I was exposing my poor son’s immune system to another chemical. It said sodium bicarbonate and potassium bicarbonate are in there – both of which he gets when in the hospital… how lucky! haha. I think I’ll mention it to his doctor tomorrow to be safe, but I don’t want to tell her why I had to use the fire extinguisher in the first place. (Please hold all the cooking jokes and no, I don’t need anyone to send me a steamer basket. ☺)

Even though I would rather not have to cook a deer and not have to clean sodium bicarbonate out of crevices with a q-tip on our “easy” days, they are precious memories shared with my family and I’m so thankful for those. I’m also thankful my house is still standing, no one was hurt and the damage to the kitchen was contained to the stove. Sometimes things in life just suck but sometimes they don’t suck as much as the alternative. Finding humor in hard situations has definitely helped us face our tribulations. Laughter is such a good medicine.

Tomorrow, we go in for blood work and we have to sit in the Pentam “spaceship” again. This weekend Colson & I are going to Austin for Hike for a Cure to raise money and awareness for histiocytosis. We have many friends who have donated and are traveling to show their support. We are so blessed. Gaky and Pops are graciously traveling to Frisco to keep Trip while we are away. Trip is super excited and has a plan a mile long of all the things he wants to do while they are here. Monday, Trip will go in for an MRI. We are hopeful it will show us this drug is the answer to our prayers. Regardless, we have each other and are making precious memories together.

Happy Anniversary

1 Corinthian 13:4-8, 13

4 Love is patient and kind; love does not envy or boast; it is not arrogant 5 or rude. It does not insist on its own way; it is not irritable or resentful; 6 it does not rejoice at wrongdoing, but rejoices with the truth. 7 Love bears all things, believes all things, hopes all things, endures all things.
8 Love never ends.
13 So now faith, hope, and love abide, these three; but the greatest of these is love.

10 years ago today Colson and I were married. 1 Corinthians 13:4-7 was read at our wedding, as it is in many weddings. Those words had meaning then, but their meaning has changed in the last 10 years. They are more powerful than before and I’m certain they will be more powerful in the next 10 years.

Marriage isn’t always easy, especially when a couple has a sick child. Bickering over where to eat or who spent too much money or who should have what responsibility can be a strain on a marriage but usually someone can concede on one issue and the other on the next. Take something someone that means more to both people than all of those things combined multiplied by infinity. When both people are scared beyond any fear ever felt, when both feel a total loss of all control, when both have separate ideas on how to handle sensitive medical situations, and when both act out of fear, there is total disruption of a cohesive unit because there is no conceding by either party when the life of their child is in jeopardy.

The last year was not easy for us on so many levels, but where we are now is so much better than where we were a year ago. We still have a sick child and are still scared beyond reason, but what we’ve learned and conquered over the last year amazes me. We’ve made it through one of the toughest years I hope we ever have to face. I have emerged with more love, respect and admiration for my husband than I would ever thought possible.

Patience is no longer about holding curse words in DFW 5 o’clock traffic. It is about staying calm in a storm, waiting for the lessons and answers to prayers to reveal themselves.

Kindness is no longer about smiling and saying please & thank-you to strangers. It’s about the outpouring of support we have received from people we’ve known for years and from people we barely know. It’s about realizing that everyone has his or her own challenges and fears and approaching them with that in mind.

Love is no longer infatuation/can’t-live-without-each other love. Love is deeper, stronger and now is love for a family - a family I couldn’t comprehend 10 years ago. Love is what I know will survive this test. I don’t know how anyone could possibly face this challenge we’ve been given without hope and faith for those are what keeps us going in dark times, but love makes it all worthwhile.

I’m so proud Colson & I are celebrating 10 wonderful years together.

The Good, The Bad, The Ugly and The Good Again

The Good: Trip’s master plan worked! We got out of the hospital Sunday morning and had the rest of the day Sunday to enjoy the beautiful, warm day. We played outside. Trip ran, rode his bike & skateboard and we even swam in the hot tub for a little while. In Trip’s words, “Freedom!”

The Bad: Trip is experiencing side effects from the chemo. He has mouth sores and a rash. So far, he hasn’t had many side effects (except for when he was on Ara-C, but seems like everyone has the same flu-like side effect from that drug) other than his blood counts being down and a little fatigue. We were in the hospital playroom last weekend playing with a little boy who had lost his hair (one of about 10 in the room). Trip said to him, “Hey. You don’t have any hair.” The little boy’s face dropped and so did my heart. I immediately said how cool I thought the little boy looks bald. Then I told Trip that he might lose his hair too at some point. Trip got upset and said that he didn’t want to lose his hair. I told him if he lost his hair his daddy is going to shave his head. The other little boy said, “Yeah, my daddy shaved his head too and besides that it will grow back one day.” Over the last year, Trip has seen dozens of kids who are bald from chemotherapy. I don’t know why that day he noticed that one kid is bald. I’m not sure why it upset him so much either, but I hope we have time to prepare him for it in case it does happen.

The Ugly: Trip is the first LCH patient on methotrexate that Dr. Appel has seen develop mouth sores. (He’s been a unique LCH patient this entire time. Why stop now?) The mouth sores are dangerous for Trip because of his Diabetes Insipidus. If he quits drinking because the pain becomes unbearable and thus stops regulating his own fluid when his medication wears off, then we will be immediately admitted into the hospital. The other concern is that this is only his 3rd round of this drug and we want him to be able to stay on it for another 4-5 months. That won’t happen if the side effects get worse. I don’t want to think the worst yet, so I’ll go back to some good…

Writing down this journey has already helped me in so many ways. It’s a cathartic outlet for me and so many of you come to me after an update giving me encouragement, suggestions on how to make this time in our lives a little more manageable and reminders of what is good in this world. I can’t thank you all enough for that. The love we are given is bigger and stronger than any disease we could face. That is one lesson I vow never to forget.

"I Quit"

Trip has had it. Day 3 of hospitalization and he is so ready to go home. Other than his disease he is a healthy, energetic little boy and being confined to a hospital room with the occasional visit to the playroom is hard on him. Treatment was delayed 4 hours on Thursday due to a communication breakdown between the nurses and our doctors that could have easily been avoided. We could possibly be at home right now if that hadn’t occurred but it is what it is.

Trip’s attitude slowly started deteriorating this afternoon because he feels a little crummy from the chemo and he wants out of here. A small task of taking medicine or getting changed for bed resulted in a fit. There was some hitting, yelling, and a few raspberries in my face. He said time and time again, “I quit. I’m going to break this hospital.” He even attempted to unhook himself from the pump. My consoling only made it worse.

At this point in our journey I thought I had mastered patience… waiting hours on doctors to show up, waiting days for test results, waiting weeks to know if treatment is working, waiting, waiting, waiting. Trip has been such a trooper during this ordeal that I realized I have patience as long as he is comfortable and happy. I started to get anxious and impatient this afternoon, which didn’t help him any.

I’m still trying to figure out my lesson today. I want to say it should be to find a way to be the patient adult Trip needs me to be at all times, but my guess is that’s a pipedream. Maybe with a little more practice. Patience truly is a virtue. Virtue schmirtue.

Trip has shared his plan with all the nurses and a couple of doctors: tonight while he is sleeping, his nurse will “get his blood out” (which means they will test the methotrexate level), then unhook him from the machines, then when Mr. Sun comes up he will be de-accessed, then he’s “outta here”. I hope it works that way for him (us) since there is that slim chance he might not clear the methotrexate that fast. I’ll be putting in a special request tonight to The Man Upstairs.