Choosing Love

We have still been battling germs at our house. Trip had/(has?) pneumonia, Colson had bronchitis, and I had strep. I think we are finally all on the mend. Hopefully we can stay well for Christmas. Trip has had a great week and was able to go to school full days last week. This week he has the regular Tuesday appointment with his oncologist to get counts before chemo starts Friday. Hopefully it will be an uneventful week as far as any illnesses go and we can get another round of chemo under his belt. There was talk of doing another chest x-ray to see if he still has pneumonia.

Trip and I went to see Rise of the Guardians yesterday. What a good movie at a good time. The Guardians are Santa Claus, Easter Bunny, Tooth Fairy, Sandman and Jack Frost. They protect children against Pitch, who is the boogieman representing fear. It is a great good vs. evil movie. I’m not sure Trip really comprehended the full lesson at his age. He was primarily happy the good guys win in the end (sorry for the spoiler ;) ). There is good in this world and there is evil in this world. There will be times we feel safe and times we feel fear. We all have a decision to make about what we believe in most and what motivates us. My hope is that we are motivated by love instead of our fears and insecurities. It is my job as Trip’s mom to comfort and protect him when he is scared and to encourage him to count his blessings. I can’t protect him from LCH. I can help him to see the good around him and the loving people surrounding us. In helping him, I'm helping myself. What we focus on gets bigger. I hope my focus is always on love.

My heart goes out to the families in Connecticut. I can’t imagine the pain and bewilderment they are facing. True evil showed its face in Newtown. I hope somehow, someway, someday they will feel safe, see the good and notice the love surrounding them.

Fever. Rocephin. Repeat.

Trip has pneumonia. We went to the ER on Wednesday night because of a high fever. Trip got a lung x-ray they said was clear. We went again last night with a fever thinking he’d get rocephin and we’d go home with no major news, but suddenly the lung x-ray from the night before showed pneumonia. (I never got an acceptable answer on why there were different results from one night to the next and if I would have learned about the pneumonia if he hadn’t had fever the second night.) We luckily got to come home. His counts have dropped since we were in clinic on Tuesday, so the worry is that we will end up in the hospital if things don’t improve. His ANC was down to 1000 last night, which isn’t terrible, but it has dropped from 3200 since Tuesday. If it drops below 500 and he has a fever, we get admitted. So far today, his fever has stayed below the threshold of having to take him in, so I hope we stay on that path.

Disease can be tiring, lonely and overwhelming for the patient and the caregiver. I woke up with thoughts of feeling incapable of doing what needs to be done to take care of my son, work, and manage life. A phone call with my mom reminded me she would drop her life to be here for Trip and me. An early morning text asking how we are doing reminded me people care. A friend who offered to bring us dinner and one who offered to go to the store for us reminded me I’m not in this alone. The wonderful friend who actually needed help himself but offered to take care of Trip just so I could have a moment to catch up with myself reminded me how good people are and that they want to help. Near and far I know people are rooting for us and would do what they can to make things easier. Those gestures can never be repaid. Saying thanks doesn’t seem to be enough. Just know that you each have my humble gratitude.

Don't Get Too Comfortable

What’s that saying? If you want to make God laugh make plans… it’s something like that. That describes our lives last week. Two weeks ago, Trip suddenly got a fever. It was Friday afternoon. Colson was hunting. Trip already his first dose of chemo that morning and was home from school to get his 2nd dose. He wasn’t acting like himself. I took his temperature and it was almost 102. I called the clinic and in we went for the intravenous antibiotics he has to have every 24 hours when he has fever. (To be on the safe side, the assumption has to be the fever is from an infection in his port instead of the likely virus.) I wasn’t prepared for how hard this was on him. He gets accessed every month to flush his port but that only takes a minute. This antibiotic came with the big bandage, the long line and a tube of medicine. The screaming and crying was intense along with a few of the kicks he divvied out. Trip was mad to say the least. His counts were good enough that we could leave after getting the antibiotic, but explaining it was only a 30-minute medicine wasn’t getting through. He couldn’t calm down while the medicine was going in. He cried and refused to rest. I said, “Trip, you know we are not staying here, right?” Through tears he said, “I know we aren’t staying here but it feels like we are staying here.” It made perfect sense to me. All the actions up to that moment were the exact steps we would take before getting admitted for the few days of chemo. We eventually got to go home, but he still had a fever so we forfeited the two remaining chemo doses for the weekend. After that, he felt better… until Tuesday.

Tuesday night we ended up in the ER. We learned Trip tested positive for RSV, which is common and shouldn’t be too scary. High fever, low oxygen levels, high heart rate, a little vomit and more antibiotics all came with round two of fighting from Trip. His fever was so high and he felt so crummy I have no idea how he had enough energy to fight but he did. We eventually got home around midnight and at 2:00 a.m. his fever was high enough to scare me. For some reason Trip doesn’t respond to Tylenol as well as Motrin, but Motrin isn’t good for chemo patients because it can lower already compromised platelets. I gave him Motrin anyway and did not sleep the rest of the night. I left for San Antonio for work at 6:00 a.m. on Wednesday. Colson had to take Trip to the hospital again on Wednesday and I decided to come back home that night.
I thought I would be used to “scares” and this would be a no-big-dealer for us, but the high heart rate, low oxygen and seeing my kid miserable struck the fear in me all over again. Visions of 2011 ICU were dancing in my head. Finally Thursday his fever and heart rate were down. We got to come home after another round of meds and stay home. What relief.

Sunday he was feeling even better so we went to church. The joy I felt watching him sing and clap and enjoy being there was overwhelming elation. I felt a pure and humble gratitude being with him in that moment after the two years of fighting and the week of struggles. What a brave boy. What a fighter. The times I’m getting kicked and yelled at while he is getting accessed used to upset me. Now I try to give thanks in those moments for the fight he has inside. He’s surviving this disease. We are surviving. We are thankful, so thankful.

We went to see Wreck It Ralph this weekend. There was a St. Jude commercial before the movie. (I can’t say enough wonderful things about St. Jude. What an unbelievably generous organization.) The message was to give thanks for your healthy kids. I give thanks for my mostly healthy kid. I’m thankful for him no matter what his state of being is. He has taught me more about love and life than I ever thought possible. Our list of thanksgivings this season far exceeds anything I could have ever imagined. I’m so thankful to each of your for your support and for following our journey. I hope each of you have a wonderful Thanksgiving week.

Good News!

Today we returned from visiting my family in Arkansas. It has almost been two years since our last trip there. It has been two years since our last family trip anywhere. It was so nice to be there and so nice to hug people who have supported us since Trip was diagnosed. These are people who are the salt of the earth and who I know would do anything for us at any hour of any day to help if we needed them. They have helped with prayers, listening ears, hardworking hands, and unending supporting. These things can never be repaid. “Thank you” doesn’t seem to be enough, but these people don’t want a thank you… they want to know how they can help now. They do it because they love us and genuinely want the best for Trip. Not visiting in almost two years meant trying to cram a lot of things into one weekend. It was impossible to see everyone we wanted to see and do everything we wanted to do, but hopefully now since I’m more comfortable traveling with Trip we will go back in the very near future.

Trip has had his oral surgery, neuro-psych test, more chemo and an MRI in the last month. The oral surgery was fairly simple other than a small vomiting spell due to the anesthesia. Trip has some silver teeth in the back and cried about them for the first few days, but now he seems to accept them.

The neuro-psych testing was interesting. The doctor explained with LCH, the MRI might show areas in the brain that could lead to changes in abilities/behavior OR there can be nothing on the MRI but there could still be changes in abilities/behavior. (Huh?) Basically there is no great science to this. Trip tested superior in all areas except his fine motor skills, which has been apparent to us. She doesn’t think it is bad enough to refer him to an occupational therapist unless he doesn’t progress like he should in the next few months with schoolwork. At this point there is nothing indicating this is disease related but rather simply his developmental path. She also explained that one of the side effects of methotrexate is causing the brain to work less efficiently over time. We won’t know when/if this will happen until it does. I’m sure I was told this side effect at one point, but hearing it again was a little shocking. I’m thankful for the chemo that has made him well but the thought of him having further issues from it is a little stomach turning. He will have another neuro-psych evaluation when he is in 2nd grade.

Trip’s MRI was on Thursday morning before we left for Arkansas. Our wonderful nurse practitioner, Sara, called me with preliminary MRI results when we were in the car. She knew I would be anxious and would sleep better with some good news (love her). Yes, good news!! The MRI showed improvement around his orbital area. Most everything was stable to improved. There are some areas of his skull that are still affected but they aren’t progressing and there is nothing in the soft tissue of the brain. Even though we haven’t seen the doctor yet for the official results, my heart is overjoyed with the confirmation of what we see everyday.

So many people have commented on how healthy Trip looks now and it makes me smile every time I hear it. He truly is my hero for enduring what he has and still finding joy in the little things. He is my constant reminder to be still, breathe, enjoy, appreciate and love.

Histiocytosis Awareness

This update is long overdue, so it is a little lengthy. Trip is doing great with chemo at home. We finished his 4th oral dose of methotrexate Saturday. His counts continue to improve, including his hemoglobin. Dr. Appel seems to be so happy with his progress. I couldn’t be more thankful for her.

Trip is doing great at school. Today is his first day to attempt a full day and it was a success. He has new friends that he loves and is looking forward to participating in some extracurricular activities.

Trip’s play therapist says he is ready for graduation! She said she has seen a huge change in him since starting school (and probably because he hasn’t been in the hospital lately) and wants him to “graduate” by the end of the month. She talked to him about how he doesn’t need to come see her every week and that he’s doing such a great job expressing his feelings. He became angry about not being able to continue, but his therapist explained to me that is a normal reaction.

We have a few challenging days ahead of us in the coming weeks. Trip has to have a neuro-psych test at the end of this month. They want to get a baseline since the MRI has shown an area in the brain that has been affected (thankfully not in the gray matter). They told us to be prepared for a full day of testing, which might be difficult on Trip. He also has an MRI the 2nd week of October, which shouldn’t be a big deal after as many as he has had, but they always contribute to some family anxiety. Dr. Appel does not want to do another PET scan due to the amount of radiation exposure he has had unless it is absolutely necessary. Trip will also have some dental work done at the end of the month. We have put off going to the dentist to focus on other obvious priorities, so now we have more problems than we want. The procedure will be done at Children’s due to his medical status and the ease of getting the work done while he is under anesthesia. I’m not happy about it and a little mad at myself for not getting him to the dentist sooner, but it is what it is and we’ll handle it. I’m trying to learn from the past and not beat myself up over what I should have done differently.

Last week, I spoke with a representative for a drug company that is developing a treatment for LCH. It was a tough and emotional hour+ of rehashing the past 20 months. At the end of the conversation, the interviewer asked me how I feel now about where we are. I told her that I will never be comfortable with my son having LCH. I will never go a day without thinking about this disease and the chaos it dumps on families, but now (especially after revisiting what we have been through since diagnosis) I feel content. It was nice to be able to say that. It is nice to feel it. The black “what-if” cloud will always linger in the back of my mind, but the difference in today versus a year ago is so great in my head, heart and hopefully actions.

Recently Colson and I have hit some rather large bumps in the road with his business. Truly gaining perspective in life can make tough situations easier to stomach. After what we have endured with Trip, it has been easy to compartmentalize the difference in work stress and life-or-death stress. A business deal gone bad won’t overshadow one minute I have with my precious son and family. Work problems still suck and aren’t always fair, but I now know the appropriate bucket to place this stress. Trip’s smiling face reminds me what is important and where my energy should be spent.

September is Histiocytosis and Childhood Cancer Awareness month. Please remember those who have been affected by disease. Please say thank you to those who have dedicated their lives to finding cures and assisting people in need. Thank you to each of you for standing by us, praying for us, encouraging us, and donating to finding a cure. Logon to www.histio.org for more information on how you can help raise awareness.

Much love and peace to all,
Mandi

Blessings

Why can’t time stand still so I can get an update written?? I never thought I would be busier with chemo at home and Trip back in school part time, but I am!

Trip started school a week ago Monday. There have been tears and a few negotiation tactics on his part (“Mom, will you pick me up in three hours instead of four? How about three and a half?”). The teachers tell me he is doing great at school and now the tears aren’t as frequent.

Chemo at home was fairly easy. The noon and 6:00 p.m. pill taking was great. The midnight and early morning hours for pills were a little rough. Trip couldn’t wake up enough to swallow sufficiently. He eventually got them down, but was pretty upset by the end of the 8 pills and actually said he would just go to the hospital instead (he was obviously very tired).

Last weekend was rather busy with fun birthday parties. I’m not sure if it was the level of activity or chemo or both, but by Sunday Trip was exhausted. He slept all afternoon and was still in bed at a normal hour. We still aren’t sure what to expect with this maintenance phase. We will learn as we go as we have through this entire process. The doctors expect his counts to start rebounding now. This week his hemoglobin went up a bit, but is still well below the “normal” range.

The Make a Wish Foundation called and asked if we would like to go Disney this month! While we were excited and honored, we didn’t feel comfortable going since starting the new drug protocol, and we were concerned about Trip being in the sun and heat for prolonged periods.

The blessings I feel right now are louder than the worrying voice in the back of my head. I’m thankful for tears about school instead of the hospital. I’m thankful for chemo at home and for Trip’s willingness to do what is needed and expected of him. I’m thankful he is making friends in school and having more “normal” days. I’m thankful for you all for following our journey and most importantly showering us with love and support.

The Unexpected

We are back in the hospital for observation. Dr. Appel felt we should do the first round of “at home” chemo in the hospital so she could be sure the toxicity levels don’t get too high in Trip because of his DI. (Methotrexate is processed through the kidneys and on DDAVP Trip doesn’t urinate as much as someone who produces his/her own vasopressin, so he might process the methotrexate at a slower rate).

On one hand I appreciate the cautious approach, but on the other hand I hated disappointing my son. Have I not already learned the lesson not to make him any promises associated with treatment for his disease? We’ve talked for weeks about how he won’t have to go into the hospital for chemo for the foreseeable future, so this was a big blow to him.

Last night he got into bed and I was telling him how much easier this hospital stay would be and he didn’t say a word. Tears just fell from his eyes but there were no sounds of crying. This morning was a different story. Trip had a complete meltdown in the floor begging me not to make him go. It turned into me holding him and crying on top of his tears. I tried to wipe the sadness away with a paper towel. He took that paper towel from me and angrily ripped it into pieces. I realized how much better that made him feel, so I gave him more paper towels and then Kleenex and then I joined in. We pretended these meaningless pieces of soft paper were LCH and we ripped them to shreds and told them to leave us alone. We even yelled at the LCH/bits of paper, “Get out of our lives you stupid LCH! Leave us alone!” (Stupid has been labeled a bad word at our house since we are preparing to go to school with other kids). The tears stopped and the anger subsided and then we were better. It was therapeutic for me, and I’m certain it was for him. Following his lead was enlightening.

Trip had to be accessed when we got here but only to make getting blood easier. He has no chemo bag or fluids. He doesn’t even have a pole to drag around, so the freedom has been a blessing if we have to be here. His first round of methotrexate was around 1:00 p.m. He had to swallow eight pills and did it like a champ! I am so proud of him. He will have another eight pills at 7:00 p.m., another eight at 1:00 a.m. and the last eight at 7:00 a.m. They will test his methotrexate levels two hours after every dose. If they are comparable levels to a person who doesn’t have DI, then we should be in the clear and will hopefully be home by noon tomorrow. We will have to come back on Saturday for the final 48-hour level check, but that should not be a lengthy process. We will leave here with a longer prescription list than we have had in over a year, but anything will be better than the hospital stays.

Trip feels good and people who haven’t seen him in awhile comment on how great he looks. I’m so thankful for his healing thus far, and I’m excited for him to go back to school. I’m hopeful there will soon be a semblance of normalcy for Trip, even though I realize there is no such thing as normal.

Quick Update

Trip finished his last round of intravenous methotrexate last week. It was the last planned hospital stay. He threw up once and got a rash, but both events were short lived, thank goodness.

His hemoglobin is low again this week, so we are watching him closely in case he needs a blood transfusion. So far, he seems to feel great.

We go in for a follow up appointment on Tuesday and will get instructions on how to proceed with chemo at home. He will take 6MP daily and one round of methotrexate every two weeks. He will have to take methotrexate over a 24-hour period: 6:00 a.m., noon, 6:00 p.m. and midnight. We might start it either on Tuesday or wait until Friday to accommodate his upcoming school schedule.

I apologize for being such a slacker with updates. Life has been chaotic the last couple of weeks. I have many texts, emails and calls to return. I promise I’ll get to each of you. I appreciate your patience and support!

Onward and Upward

Trip finished chemo this week. He didn’t eat much at all this week due to some stomach issues. We still aren’t sure if it was the chemo or maybe a bug, but we think it’s all behind us now. We were discharged last night around 10:30. When we walked outside it was 92 degrees and humid. It felt like walking into a wall to me, but Trip took a deep breath and said, “Ahhh, feel that fresh air. It smells so good.” The little things appreciated by him remind me that life is all in the perspective.

We go back next week only for blood work and the following week for what we hope is his last intravenous round of chemo. The doctors gave us the green light for putting him back in school since his counts have been decent lately. We think it will be great for him to be around his own peers and to be in a “normal” setting again. We will start him part time until he builds up stamina. I’m sure there will be an adjustment period for all of us, but we are a little excited about it – even Trip.

Relief, thankfulness and fear are still the emotions surrounding me right now. I heard someone say this week that you can either worry or pray but why do both? One of my friends told me last week that worrying is like rocking in a rocking chair all day because it’s exhausting and doesn’t get you anywhere. I’m challenging myself with these thoughts in mind to leave the worrying behind.

I’m so thankful to everyone for their continued thoughts, prayers, words and acts of encouragement and support. I can’t imagine what this experience would be like without people in our lives showing us love and consideration. Much love and gratitude to all.

More Good News

Trip’s port works! They accessed him again today and were able to get the blood to drawback. They removed the IV in his arm, so he will finish getting his fluids through his port. As soon as he clears the methotrexate we will get to go home. The list of things to be thankful for continues to grow.

Thankful

“Overall, there is evidence of decreased manifestations of the patient’s Langerhans Cell Histiocytosis. The lesion involving the left maxillary is markedly smaller as is the lesion of the left mandible. The skull base lesion is stable though it does have a slightly elevated SUV. The lesions involving the feet have also almost completely resolved. The are not new foci of hypermetabolic activity identified.”

Good news, good news, good news!!!! The PET scan shows positive results! Methotrexate appears to be working! The doctors are very pleased and I’m following their lead. The area of concern is the skull (why couldn’t it have been a bone farther away from the brain?) since it has not changed in size and since the skull SUV is elevated since the last scan. The doctors have stopped short of telling me the SUV numbers are meaningless, but they have said we can’t put a lot of faith in the PET scan since it has only recently become a tool used in histiocytosis diagnosis. The confusion for me is that we are putting faith in it when it says the SUV numbers have decreased, so shouldn’t it work the other way? There is also the thought that “baby” cells trying to regrow the damaged area would light up on the scan also.

Our question of whether or not the damage around his orbital area is scar tissue still remains. Our doctor is considering a biopsy on the area. I feel like that is too invasive and unless it would change the course of treatment I’m not in favor of it. The plan right now is for Trip to have three more rounds of intravenous methotrexate so he will have a solid six months of this treatment under his belt. After that, assuming that everything is stable, we will move to an oral methotrexate at home. If there is a reactivation in less than a year, we will have to go to clofarabine. If Trip can go more than a year without a reactivation of disease, we could go back to methotrexate since we know that has worked for him.

We are in the hospital now getting chemo and have hit a bump in the road. Last night while sleeping the needle somehow became dislodged from Trip’s port, so methotrexate was going into the soft tissue surrounding is port instead of his blood stream. The methotrexate will take about a day to completely absorb into his body, but luckily, thankfully it is not one of the chemo drugs that could do long-term damage to his tissue. It is extremely painful for him, but in true Trip form he was a trooper telling jokes to the nurses in one breath and then crying and yelling in the next breath when he had to be accessed again. The next disappointment came when no there was no blood drawback from his newly accessed port. The fear is that the blood has clotted and the port will not longer be able to be used. They are trying to breakdown whatever is in there causing the blockage, but so far nothing has worked and everything put into the port has been very painful for Trip. This started around 5:00 a.m. today and by 8:00 a.m. he had his port accessed for the 2nd time in 24 hours and an IV in his arm in order to continue the chemo. The chemo has to be completed in 24 hours after beginning, so it was imperative to start it again quickly. Since chemo is the priority right now we will finish it tonight then focus on the port issue. The hope is tomorrow he can be accessed again (don’t tell him that) and he will be pain free and not so stingy with his blood. Otherwise, we are looking at surgery.

The lesson this week should have been a no-brainer as a parent, but we blew it… don’t give my kid something to look forward to without knowing for sure it is going to happen. With the good news we got from the PET scan, we decided to take Trip to the lake this weekend with friends. Even though he can’t even put a big toe into lake water, being out of town for a change of scenery with friends was going to be a big deal for all of us. He has been so excited and it’s one thing we keep talking about when things get painful around here. Now, with the port issue I’m not sure we will get to go. I can’t stand the idea of breaking his heart, but hopefully I can distract him by taking him to Toys R Us for anything he wants. (I folded like a cheap lawn chair in the early morning hours seeing tears stream down his face while being poked and prodded on and promised him the sun and the moon.)

I feel relief. I feel gratitude. I feel blessed. I am still confused, exhausted and worried, but overall the breaths I’m taking today are easier than the ones I took yesterday. Thank you to all prayer warriors/positive energy contributors/love providers. You all have made a difference and we are so very thankful.

3 P’s: PET, Puke, and Positivity

Trip’s PET scan was finally today. It started at 1:00 p.m. so it was harder on him than usual due to the amount of time he realized he was without food. I woke up this morning with a flood of memories from a year ago when his MRI revealed the disease had spread. I tried to push those fear images aside and visualize only the love that is surrounding Trip. This disease cannot penetrate love and that thought comforts me when fear creeps in.

Trip was a trooper as always but had a rough time waking up from anesthesia. It’s not uncommon, but it certainly isn’t something we are accustomed to seeing with Trip. He couldn’t stop crying and couldn’t be consoled. The crying on stop of the hard sleep combined with the orbital mass made his eye bulge more than we’ve seen before. That was unsettling but explainable since we know the mass is still there.

Once we got home, Trip ate dinner and a cupcake (his usual reward for a hard day of not getting to eat or drink). We snuggled on the couch and played a little. After breaking through and drinking a little more than his normal fluid intake, he began to complain of a tummy ache. I halfway listened to him since he can be a bit dramatic at times but eventually forced him to take Zofran. As soon as he gagged on the Zofran, he projectile vomited all over the kitchen counter… four times. He said he felt better and also said that I should listen better next time. I’m hopeful it’s not going to be the “persistent” vomiting that they warned us about after anesthesia, but so far just the one time in the last hour. I’m on alert until I’m certain though.

In his own way, Trip has reminded me of the importance of positive thinking. His glass half-full approach has alerted me that suddenly my glass is half-empty. In effort to keep Trip from being disappointed at times, I try to prepare him by asking him questions like, “What if they don’t have the book you want to read?” and “What if Kroger doesn’t have any small shopping carts?” His usual response is, “What if they do?” For a long time I took this as him being combative until we were in the hospital last weekend waiting to go home. We were delayed getting discharged again, so I began to think we might have to stay another night. I wanted to prepare him and asked, “What if we don’t get to go home tonight?” and he looked me dead in the eye and said sternly, “What if we do get to go home?” It shocked me a little because I realized how right he is to think the positive way he is thinking. Who am I to squash his innocent view of the good that can happen? I can’t keep him from having his share (or possibly more than his share) of disappointment in life. Instead, I hope to help him believe he can handle whatever disappointment he does face.

That lesson was big for me today especially. When the fear thoughts came in this morning of not getting news we want from today’s scan, I turned my what-if thought into one of Trip’s what-if thoughts… “What if this scan shows the disease has progressed again?” was pushed out of my mind with “What if this scan shows no active disease?” Part of me is still in protective mode and doesn’t want to get my hopes up too high, so this lesson is a work in progress as many of my lessons are. We should get the PET results on Tuesday. Whatever news we get, I can handle it.

Chemo While We Wait

We got Trip’s MRI results today at his appointment. The MRI is stable. There is a possibility that the lesions that were affecting the brain matter are no longer there OR the radiologist missed them. (I realize what a huge difference those two are and almost didn’t want to even write that sentence but I want someone else to share in my annoyance.) I’m certain it is the latter since there are no other significant changes – the pituitary damage will never be undone and the orbital areas appear to have the same mass. The question is whether or not the mass is active disease.

Since the PET machine is still down that won’t be answered any time soon. They hope to know by this afternoon if the machine will be working this week. In the meantime, the doctor and I think waiting for the PET scan and results risks the disease flaring up since it would be almost four weeks between treatments, so we are being admitted tomorrow for another round of methotrexate to “hold him over”.

Family Update

Trip’s MRI was thankfully uneventful. He was brave and it was over quickly. We still haven’t heard from the downtown hospital to reschedule the PET. Obviously it will be the end of next week if next week at all. We go to the doctor on Tuesday for a follow up.

My dad had his prostatectomy on Thursday. I should have been there but thought Trip was having his PET. The doctor said Dad’s was the hardest/longest procedure he has ever done. Trip thinks Pops has a "peeper affection"... what??!? He is concerned about Pops having a "peeper tube" because he has had one and HATES the thought of it. Dad is home resting now. I know Mom can care for him, but I feel like I need a clone. Never have I wanted to be in two places so badly. I’m ready for everyone to get a clean bill of health. I’m ready for a boring life that I treasure. Until “boring” comes along, I’ll still treasure this life I’m blessed to have.

I appreciate so much everyone’s thoughts and prayers for our family. I appreciate those of you close to my parents for checking on them and being there for them. I hope everyone have a very happy and safe Memorial Day weekend. Much love and peace to all.

Trust

Trip had an appointment today to get his ears checked. The doctor said they look great… for Trip. They are in no way perfect, but he said from where we started they look great. That made us both so happy we had a dance party in the car on the way home! It gives me hope going into getting his scans since it should be a sign the disease isn’t affecting his ears right now.

Getting scans at Children’s is never easy – emotionally, physically and logistically. I’m sure most of you have read or heard my rants about giving him back to back scans instead of scheduling them both on the same day. After moving his PET scan once, we were expecting to have it tomorrow downtown and his MRI on Friday at Legacy. The hospital called today and said the scanner is down, so the PET will be pushed to sometime next week. We should still proceed with the MRI on Friday since Legacy seems to have their ducks in a row. At least he won’t have to have anesthesia two days in a row.

I’m enjoying this time off from chemo, but there is a voice in the back of my head that keeps chattering. Scans bring up hope, fear and every emotion in between. I want to know where we stand and of course I want good news, but there is that self-protection thing going on where I tell myself not to get my hopes up too high. Also, really good news will mean we go to a maintenance phase. I want that for Trip, for all of us, but last year the “maintenance phase” sucked us into hell with the news that the disease had spread. I’m a little worried about getting off chemo even though that’s what I want. It’s confusing and scary.

What I have to do right now is trust… trust the doctors know what they are doing, trust that putting the PET scan off a week and delaying the next treatment further isn’t a big deal, trust my own eyes and intuition to know that Trip feels good, trust that the universe is working for us to heal Trip. Trust can be hard for me. It means letting go and reminding myself that control is an illusion. Right now, in this moment, I will trust.

Finding Strength

Trip has been feeling “great” after getting out of the hospital last week. We got home by 9:00 last Thursday night. We were able to have a wonderful Mother’s Day weekend at home and with friends. His counts were pretty good this week, too. He feels so “normal” that I can help but smile about that and feel good about how strong he is.

Our last day in the hospital, we met another little boy with LCH who is also on methotrexate. He has skin only involvement, which is the best-case scenario for LCH, but has been on chemo for about 5 years. Every time he stops chemo the disease comes back. I know this is the sick reality of this disease, but it still makes me angry. It’s always nice to connect with another family going through the same thing.

Monday, we said goodbye to sweet little Jenson. It was such a beautiful service to remember him. The stories of his cute personality produced laughter through tears. I could not control my emotions through the service and have yet to have a day when the sadness does not surprise me and take over. I recognize part of it as fear, but most of it is feeling pain for friends that had to bury their precious child. I still cannot reconcile the death of a child. It seems so unnecessary. Even though Jenson’s parents are grieving, they unselfishly asked me and Colson to rise during the service while a picture of Trip was on the screen. They were raising awareness of histiocytosis and attaching another family to the pain of this disease. They provided information on how to support histio research. What a positive example of focusing on others through immense grief. I wish I could ease their pain.

I’m trying to focus on the positive. We had a wonderful family dinner last night. Trip was happy and eating great. I found myself praying for more moments like that. It was such a feeling of love for my family. Today, I have been blessed by unexpected, encouraging words from a friend when I most needed them. Colson will celebrate his 40th birthday this weekend. Gaky and Pops are coming to visit this weekend. We got a surprise call today to let us know we will hear from Make a Wish Foundation soon. I explained it to Trip and he said he wants to go to Hawaii! He quickly changed it to Disney World because that’s where is friend Carter wants to go for his wish. There are so many things to be thankful for that can easily be clouded by fear and sadness. Counting my blessings, living in the moment and feeling the love surrounding us give me strength.

From Expecting to Appreciating

Trip’s follow-up appointment on Tuesday led to him being admitted at Legacy to start chemo a couple of days earlier since he counts were good. This was under the urging of his oncologist and under much protest from his endocrinologist. Things have gone much more smoothly than downtown Children’s. He was accessed in clinic and didn’t even shed a tear! According to Trip, Nurse Jill knows exactly how to do it without hurting him. All I had to do was hold his shirt over his mouth (to avoid spitting on the access site) and Jill did the work. That’s a huge change from the typical four people who have to physically restrain him just to be accessed. It’s obvious we are both much more comfortable being in clinic at Legacy.

After he finishes this round, we wait for scans the week of the 20th to determine the next drug protocol. I’m working on my expectations lesson. It is hard. Honestly, I’m expecting Trip to clear methotrexate and be released from the hospital tonight. I’m expecting his scans to give us good news. I know better than to expect either one. I’m a planner and drive Colson crazy with my need to plan. It makes me feel secure. I don’t like surprises. I know it’s my way of trying to control everything. At this point I know very well I cannot control this disease. I was given great advice last week: change the expectations of tomorrow to appreciations of today. I have consciously worked on that this week when I catch myself projecting what will happen next. It has been a challenge but it has also helped me live in the moment.

Tuesday, Trip’s LCH warrior friend, Jenson, left this world and went to a pain-free place of peace. Although it was expected, the news still ripped out my heart. I was visibly upset and unable to control my emotions while in the hospital with Trip. He asked why I was crying and I told him about Jenson.

Trip stopped what he was doing and asked, “Did he go to heaven?”

I said through tears, “Yes, baby, he is in heaven.”

He looked at me with a huge smile and exclaimed, “That is so cool, Mom! He gets to be in heaven with all the angels! Don’t be sad.”

I explained that I was sad for his mommy and daddy and sister, but I’m so happy for Jenson. That precious little child deserves peace. This disease deserves to be punched in the face.

Growth Spurt

The weekend turned into a bigger test of patience for me. I guess my teachers were giving me the opportunity to retake the test I failed on Thursday. Trip didn’t start chemo until 3:00 p.m. on Friday (for various reasons that I don’t have the energy to explain). He had to have a blood transfusion before we could leave on Sunday, so we didn’t get home until 6:30 Sunday night. We were all thankful to be home. He says has mouth sores again, but I can’t see any. I tried to find comfort and peace in that our biggest problem of the weekend was being in the hospital and being consistently delayed. I know some parents that would give anything for that to be their only problem. I feel off-kilter and completely overwhelmed right now. This Daily OM was in my mailbox and makes sense to me right now on some level…


We can also benefit from times of constriction and difficult to help us grow and learn.


It can be very challenging to maintain a positive attitude and a measure of faith when you are in the midst of difficult times. This is partly because we tend to think that if the universe loves us we will experience that love in the form of positive circumstances. However, we are like children, and the universe is our wise mother who knows what our souls need to thrive better than we do. Just as a young child does not benefit from getting everything she wants, we also benefit from times of constriction and difficulty to help us grow and learn. If we keep this in mind, and continue to trust that we are loved even when things are hard, it helps us bear the difficult time with grace.

This period of time in history is full of difficulty for a lot of human beings, and you may feel less alone knowing you are not being singled out. There are extreme energy changes pulsing through the universe at every level and, of course, we are all part of the growing process and the growing pains. It helps if we remember that life is one phase after another and that this difficult time will inevitably give way to something new and different. When we feel overwhelmed we can comfort ourselves with the wise saying: This too shall pass.

At the same time, if you truly feel that nothing is going right for you, it’s never a bad idea to examine your life and see if there are some changes you can make to alleviate some of the difficulty. Gently and compassionately exploring the areas giving you the most trouble may reveal things you are holding onto and need to release: unprocessed emotions, unresolved transitions, or negative ways of looking at yourself or reality. As you take responsibility for the things you can change, you can more easily surrender to the things you can’t, remembering all the while that this phase will, without doubt, give way to another.

Wearing Thin...

My patience that is… It’s 9:00 p.m. and Trip hasn’t even been accessed, but it doesn’t matter because he isn’t starting chemo until tomorrow morning around 9:00. It has been a day that has really tested my patience. I’m certain I’ll get an F on this test.

We were literally on the road to Children’s downtown three separate times today and two of those we were told to turn around and go home because they gave our bed away. After the second time, I called our endocrinologist and left a message with her nurse that I think it is ridiculous that Trip can’t get chemo at Legacy (for you out-of-towners, closer to home and less busy) when the endocrine team barely even sees him when he is in the hospital. Then I begged her to loosen up on her rule of making us go downtown “just in case” we need the endocrine team. Thinking back, I should have been as sweet as punch since I asked for a favor. Maybe she’ll like the word “ridiculous” when the message is passed on to her.

We were told to be at the hospital at 6:45 p.m., which is horrible timing given that it’s rush hour and the fact that Trip is breaking through at that point. I took the urinal in the car just in case, but he fell asleep half way down here since he never got a nap due to the constant come-down-go-home interruptions. Since this is really just a vacation night in the hospital I thought we could go to bed early, but I should know better. We are still waiting on his DDAVP shot that he should have had an hour ago and now they want to access him before bed. The charge nurse, who we love and did her best to get us a bed today, came in and told me that it now says in Trip’s chart that endocrine doesn’t have to consult. I think I need to go to sleep before this test of patience continues. What was that lesson about expectations a couple of weeks ago? I obviously need to practice that one a bit more.

Smiling through Sadness

Trip’s pre-chemo appointment went okay today. We had to get in the Pentam booth. He was not happy about that but did great other than a few tears and questions about why I was being so mean. When he finished he was wheezing, so he had to have a second breathing treatment. He felt much better after that. Trip’s hemoglobin is holding steady at 8 when it should be at least 11. For some reason that never recovers for him. He will probably need a blood transfusion while in the hospital this week. I’m not a fan. The plan now is to have two more rounds of methotrexate and then have a PET scan and an MRI the week of May 20. Those results will determine the next steps. We had a good visit with Trip’s friend Carter and my friend Tammy today at lunch. They are usually in clinic once a month when we are there and Trip looks forward to seeing them. Carter had lymphoma and has been in remission since the end of last year. Seeing how well he is doing makes my heart smile. Watching Trip play with him makes me so happy. Talking to Tammy helps me to feel “normal” and that makes me happy. What doesn’t make me happy is news we received last week. Trip’s buddy Jenson who has been fighting LCH is losing his battle. He has been on chemo for three years and recently had a bone marrow transplant. He now has brain damage, bleeds and meningitis. I’m sad. I’m angry. I’m confused. I’m scared. This precious little boy has spent his entire three years of life in hospitals fighting for his life and in the end will not make it. Jenson’s mom and my friend, Kristin is handling this with more grace and peace than I could ever muster. I realize no one is guaranteed tomorrow with his/her children. Some of us have time to plan for the day that will happen and have to wake up, get up, and show up knowing that one day in the very near future our world will be missing a sweet, innocent child. I watch and hurt for their family and try to offer words of comfort all the while silently hoping and praying that will never be my child.

Energy

Trip was discharged from the hospital at 10:30 Saturday night and it couldn’t have come sooner for either one of us. They asked us if we wanted to wait until Sunday but didn’t encourage it because they would be short staffed and it would take longer to get through the discharge process Sunday morning. They didn’t have to push us to leave! We were in bed by midnight and thankful to wake up in our own home on Sunday morning.

Saturday was eventful before we left. Trip accidentally pulled out his line just enough where the needle was still suck in his skin but it wasn’t fully through his port so fluid was going underneath his skin instead of in his bloodstream. (That was a really wordy sentence – hope it makes sense.) He had to be accessed again, which is the part that is hardest on him. He was really brave and they were able to get him accessed again for fluids for only 6 more hours. The chemo finished the night before, so we were lucky that wasn’t a factor.

Since Trip has DI, we have to keep up with all his ins and outs while in the hospital, so that means someone holding a urinal and measuring every time he has to go to the bathroom. I was peed on for the first time since he was a baby. He thought it was hilarious! We both got a good laugh and of course he threatened to do it again. The next time he actually peed on himself, which really made him mad. It was his first lesson in karma. ☺

Trip says some funny and also profound things that make me smile. I say, “Geez Louise” often. Trip says, “Geez Little Wheeze.” Friday night Colson was ordering Trip a pizza to the room and Trip told him that he wanted cheese and “no Halloween guys” which we figured out means no jalapenos. I mentioned that I made a mistake. Trip told me that was okay because everyone makes mistakes and if we don’t make mistakes we can’t learn and grow. (This is the same kid that talks about cigarette smoking?? I’m pretty sure he just knows how to get my blood pressure up.)

Trip’s counts looked great yesterday with the exception of his hemoglobin, which is usually low. We have to watch for headaches, fatigue, just overall feeling crummy. There’s always the possibility of him needing a blood transfusion, but so far he has only had to have one since the beginning. The nurses always comment on his energy level and wonder how it’s possible to have so much energy with a low hemoglobin level, so we’re thankful he feels good regardless of the numbers.

Sunday Trip got to go to Main Event with his god-brother and had a blast. He stayed all afternoon and played harder than he has in a long time. Monday, we took a blanket outside and watched the blue sky, small clouds and let the wind blow. Trip kept saying what a beautiful day it was. Yesterday, he was able to go and stay at his gym class for the first time in months (he usually gets too tired to finish it) and we went to Colson’s softball game last night. We are focusing on the positive and making the most of every moment, even the small ones. Everyday he has a job to say, “I am healthy and well.” Today he said, “I am healthy and well and happy.” I love that kid.

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.

We'll Take It

Trip had a follow up yesterday with Dr. Appel. She agrees that his skin has greatly improved and even thinks the eye bulging has gone down a little more, which hopefully means the mass in the orbital area is shrinking. She sent us to radiology for his skeletal survey. He was the perfect patient and almost knows how to position himself for the numerous “pictures” since he has been through it so many times.

Dr. Appel called last night to tell us the bone lesions look stable and a few are slightly improved. Of course we want all the lesions to be gone/healed, but we’ll take this. It means we can stay on methotrexate for the time being, which means we can count on him tolerating the drug well (not the hospital stay – the drug). She plans to give him two more rounds of chemo then do an MRI to check the existing mass and make sure the brain hasn’t been affected further. If things continue to improve on methotrexate, he will possibly continue it for the next 4-5 months and then hopefully move to an oral chemo for 6 months after that. We know at this point, we can’t count on anything to stay the same (especially treatment), but we hope this best-case scenario plays out to be true.

Last night I started on the mounds of medical bills that have been piling up since the beginning of the year. I was tired and didn’t want to look at them but just wanted to add them up and write a check. I’m thankful I sucked it up and went through them all because I found so many errors: wrong patient name/services, wrong company name that resulted in out-of-network claims, misapplied coinsurance. Those errors resulted in $2k overbilling that I would have missed if I had been lazy. Today’s lesson: always, always check and double check medical bills.

We are gearing up for Hike for a Cure in Austin on March 24. We have so many friends and their families participating and feel so blessed. The fund raising efforts have amazed me so far and give me hope that one day our efforts will lead to a cure. Together we will fund a CURE! http://www.active.com/donate/h4ac-texas

Small Victories

Trip had a great birthday! Thanks for all of the happy wishes. Gaky was here for his birthday or we might have postponed it. I have strep throat and between trying to rest, work and make sure Trip didn’t get it everything was on Gaky’s shoulders. She got him a cake, bought him many presents, and made his birthday special.

We went in for blood work today. Everything is good except his hemoglobin, which probably explains why he is more tired than usual. We also had to get his monthly dose of Pentam, which is an antibiotic that he has to have because he’s allergic to the other two options. To get the medicine, we have to sit in a booth (phone booth size) and wear masks. His mask produces a gas that he has to breathe and my mask is to protect me from the carcinogen. This is usually 15 minutes of hard labor for me, as I have to hold his mask on and physically restrain him from ripping it off & running out of the booth. Today, he decided he was going to hold the mask on by himself. He almost held it the entire time, only cried half the time, and I never had to restrain him. I am so proud! He asked me yesterday, “Mom, what do 4 year olds get to do?” (probably thinking I was going to tell him he gets to start driving now). Today, I told him one thing is they learn they can do really hard things by themselves.

The FDA has given permission for another company to start making methotrexate, so hopefully the shortage scare is behind us. We go in for a follow up with Dr. Appel on Tuesday. We should get a skeletal survey then too. Hopefully it will show improvement so we can stay on methotrexate.

Friday and Saturday, Feb 24-25, Liam’s Lighthouse Foundation will be outside the Today Show to raise awareness for histiocytosis. Family, friends, volunteers will be holding posters of ones diagnosed with histiocytosis to draw attention to this rare disease. Tune in if you have time.

Today, I’m celebrating the small victories.

Home Sweet Home

We were discharged from the hospital are home catching up and resting. Trip feels “free” again and even did some breakdancing so the doctors & nurses could see how ready he was to leave. The Methotrexate has not been too hard on him other than spending the few days in the hospital and being hooked up to machines. He has been nauseated but finally ate a little when we got home. Hopefully we’ll be back to our normal until we go back in 10 days (assuming his skeletal x-rays show signs of improvement).

His endocrinologist added a test while we were there to see if he is producing cortisol. He was on high-dose steroids for a big part of last year, so we weren’t able to test. We have been supplementing him with a small amount of hydrocortisone since he came off prednisone. The test proved his adrenals are not making cortisol, so we will continue to have to supplement the rest of his life. We have a shot that we have to keep with us for emergency situations and have to give him stress doses when he’s sick or goes under for scans or surgery. This of course can be and has been managed, but was still a disappointment to learn that his body isn’t doing its job in that area either.

We are humbled to have so much support from all of you. Every time we feel sad or overwhelmed, we are reminded how much support we actually have and how many people are in our corner.

I am so thankful my son came home from being in the hospital for days and still felt like going outside to play. I am thankful my family can have dinner together and can sleep under the same roof tonight. I am thankful that I can shower in my shower and sleep in a comfortable bed. I am thankful I have a full pantry to go to when I get hungry tonight. My lesson is not to ever take the luxuries in my life for granted. There is always something to be thankful for.

Breakdown

We saw Dr. Appel on Tuesday and asked about Methotrexate. At the time, they were having meetings on how to best “conserve” the drug. She admitted he is a candidate to get bumped if the supply does dwindle more, but thought that we could get one more round in. What they have explained to me is that are conserving and not rationing, meaning they will make sure kids that need the drug are admitted on the same day based on their prescribed amounts so that nothing in a vile is wasted – basically a logistical issue for them. They aren’t withholding it from any kid at this time. They think the media has blown it up a little but think that might help in getting the supply started again (with a much bigger price tag).

The new treatment plan is for Trip to have another skeletal survey in two weeks before his next dose is due to see if the lesions in his bones are improving any. (She wants to hold off on the MRI and the PET due to the amount of radiation exposure unless it is needed.) If the bones show improvement we will continue another two rounds of Methotrexate and then have the PET and MRI. If there are new lesions on the bones or growth in the existing lesions, we will go immediately to our toxic friend, Clofarabine.

This has been an extremely challenging week for our family outside of Trip’s disease and related medical issues. We had to make a gut-wrenching decision that ultimately broke my heart. It took my focus off of Trip and put me in a place where I had to call for backup. We were in the hospital yesterday when I called my mom in panic mode. Within 7 hours of that phone call she was hugging me and reminding me what is good, true and important in life. She was making my son happy and giving me comfort. What greater blessing is there in life than having loving, steadfast family members?

My lesson for the week is to keep my eye on the ball.

While Trip was hooked up receiving chemo yesterday and I was having my breakdown, he grabbed my hand, kissed it and hugged me. He said, “Mom, I’m going to do everything I can to take care of you.” He gives me peace, comfort and hope even when I should be giving it to him. He’s a beautiful child inside and out and I’ll be forever grateful that he is mine.

We will hopefully get to go home tomorrow if the Methotrexate is out of his system. His birthday is Tuesday, so I’m looking forward to celebrating his 4 years of life and spoiling him rotten just because I can. I’m so thankful we will be at home and together on his birthday.

Shock

A “chemo” mom friend sent me a text this morning asking if Trip would stay on Methotrexate with the shortage. WHAT??

I ran to the Internet to pull up this not-so-reassuring article: http://www.nytimes.com/2012/02/11/health/policy/supply-of-methotrexate-a-cancer-drug-may-run-out-soon.html

Since Trip isn’t a kid with ALL whose life would be immediately at risk if he stopped receiving the drug, my guess is we may get pushed to the low priority list. Just when we felt like we were on the right track.

I will ask Dr. Appel on Tuesday what the chances are we will get bumped. Until then I will hope they find a way out of this for all kids’ sakes that need this drug. We might end up on toxic Clofarabine after all. Seems so hard to be a cheerleader for poison.

Today’s lesson should be not to panic before all the details are known. I’ll try to remember the lesson after Tuesday.

Today's gratitude is that for a mom who thought of us when hearing that news piece.

“Mom, what’s Diabetes Insipidus?”

Yesterday we went to the hospital to get Trip’s blood counts and for an eye exam. His counts were great, which is good news but typical on Methotrexate. They are unlikely to go down on Methotrexate compared to the rest of the chemotherapy treatments he’s had. He did great on his eye exam and can even see a little better than I can with my contacts (which isn’t hard). As soon as the doctor entered the room, she exclaimed, “Oh his eye looks even better than the last time!” What a relief!! News we’ve been hoping to hear for so long. The bulging in his eyes has decreased to where he finally is getting a little crease in his right eyelid. The small victories mean so much these days since we went so long without any good news. We don’t have to go back to her until after the next MRI… big change since we were going every week not long ago.

This morning, Trip popped up from watching Tom and Jerry and out of the blue asked, “Mom, what’s Diabetes Insipidus?” We don’t shy away from talking about his disease in front of him, but I was surprised he remembered that specifically and while doing nothing. I tried to explain it so a 4 year old could understand it and told him his body doesn’t know how to hold onto his peepee like it should and it’s what makes him thirsty when his medicine wears off. He sat there for a few seconds to let it absorb and said, “You know what I think it is? Diarrhea.” (He said this because when his medicine isn’t onboard and he consumes large amounts of fluid, he sometimes ends up with diarrhea. He HATES getting diarrhea. It has the potential to ruin his day but typically stops once his shot is given.) I told him diarrhea is definitely a symptom of DI and that he’s one smart kid to even ask. I asked him if what I told him made sense to him and if he had any questions. He simply said, “No, Mom. I’ve got it now.”

Lesson of the day: Never underestimate how smart my kid is and how well he can take honesty even when I perceive it as bad news.

Trip had a very hard time last year when he was first diagnosed with needles, blood, doctors, getting accessed for treatment, etc. He would threaten to break the hospital down with his “magic” sword. It got to the point to where his doctors suggested he go to play therapy. It’s just like therapy for adults but the kids use toys to express how they are feeling. He goes once a week (as long as there aren’t any other more important appointments) and works for 30 minutes. He has missed the last two weeks because of treatment and another appointment. I can see a decline in his attitude when he doesn’t get to go. He has done play that indicates a feeling loss of control, which is totally understandable. Recently he has started doing death play. Colson thinks it reflects what we do at home – pretending to be injured and he saves us or vice versa, but his therapist thinks this is a little more serious than just being the hero. She said what he is doing in there is wonderful and the type of work he needs. I hope she is right and he does feel relief from the sessions. He seems to enjoy them, but a cardinal rule is that I ask him no questions about his session, not even if he had fun. I have no idea how he made the leap from his disease and what he is going through to death. I thought that was a very adult subject that wouldn’t occur to him, but once again he surprises me with his perception.

We go in Tuesday for more blood work and a follow up with the doctor. They want to admit him for treatment again on Thursday and hopefully out by Sunday. These hospital visits sure are going to make the weeks go by fast. We are looking forward to a weekend of doing nothing and everything he wants at the same time.

Throw a fit, give thanks and write.

We got discharged from the hospital last night but not before a small fit was thrown… by me. From a HemOnc perspective, Trip reacted as expected to the Methotrexate and his levels dropped to .06 – safe enough to be released. We were all so happy, so we packed up and waited for the discharge orders. Then the oncology fellow waltzes in and says, “Endocrine won’t release him until he’s on his home DDAVP routine.” HUH? I explain that his actual endocrinologist that was on call over the weekend and I worked out the details of how to manipulate his DDAVP dosage and that she has a lot of trust with my knowledge of his DI. I was told that doesn’t matter and that the doctor on call now is calling the shots. “YOU MEAN THE DOCTOR THAT DIDN’T EVEN STOP BY TO SEE HIM TODAY??!?!?!” That was the beginning of the fit.

I demanded to see the doctor for a full explanation of their reasoning and the goal they want Trip to achieve before going home. I explained my understanding and agreement with his endocrinologist’s perspective. This is the problem with hospital stays and having DI. DI is extremely subjective and every doctor has a different method of dealing with it. When Trip is in the hospital for any length of time, we might see 3 different endocrinologists with 3 different opinions (basically the reason we were in the hospital for weeks last year).

Not sure if the doctor heard about my fit and got scared or was already at home sipping on a martini, but he/she never showed up. About an hour later, the nurse came in and said we were getting released.

Lesson #1 for the day: Throw a fit. ☺ Actually, the lesson is to stand up for what I know is best for my son. My beautiful, intelligent, RN cousin told me she always encourages her nurses to go with the mom’s intuition because they know their child better than anyone. Good, solid advice. Trip’s endocrinologist knows everything we’ve been through and knows how I treat his DI, and she also encourages me to question everything. I’m happy I did.

When we were leaving the hospital Trip literally ran out with his mask on. We got looks like “that kid is on chemo?” and I loved them because to me it meant he was feeling good. When we got home, he ran around the island in the kitchen yelling, “I’m free! I’m free! I’m free!” and giggling. It was wonderful to see. Later the three of us got in the bed and wrestled I gave thanks for those moments… our little family was under one roof enjoying each other and my son felt good and happy! Lesson #2 for the day: Give thanks constantly for every little thing. Gratitude makes what I have enough and brings me joy.

Lesson #3 for the day: Write. The writing thus far has been so therapeutic and has brought people to me that encourage me. It has given me much perspective on the day-to-day events and a way to process the feelings. I didn’t realize how much better I would feel in doing it and how many people are out there cheering us on. THANK YOU TO ALL. The encouraging words make all of this a little more bearable.

Is having no answer an answer?

Trip’s Methotrexate infusion finally finished yesterday. So far so good. He doesn’t seem to have much of an appetite, but that is normal for a chemo week. When the infusion finished and the machine beeped he yelled in delight, “Mom, we’re finished! We can go home!” He is used to the machine beeping and then we get to go home. Not this time. We have to flush the Methotrexate out of his body and no one really knows how long that will take. Leukemia patients get more of a dosage, so it might not take the three days it takes them to clear it but he has DI so it might take longer if he can’t pass the fluid as quickly as he should.

I tried to explain to him that the beep this time doesn’t mean we get to go home. Should my answer to him be, “Trip, with this chemo protocol we have to wait until the Methotrexate clears your blood. Because you have Diabetes Insipidus it is a little harder to manage because your kidneys don’t release fluid like they should. We have to wait and see how long it will take.” or should it be “We get to leave when they say so.”

My defeat in not knowing how to answer him led to a non-answer. Maybe my brain is fried or I’m just tired. Luckily he’s a trooper and goes with the flow other than occasionally telling the nurse, “I’m taking you down, Jennifer!” as Alvin says on Alvin and the Chipmunks. My lack of an answer to him didn’t greatly impact his demeanor.

I slept at home last night so I could get up this morning and work early and Colson stayed with Trip. On the way home I had a chance to meltdown in private. Seems like there is a big black cloud hanging around our friends. We have an LCH buddy who is fighting for his life after a bone marrow transplant last week. We have friends who were forced to say an early goodbye last weekend to the newborn they have been preparing for 9 months to take home. We have yet another friend who begins his third fight against cancer this week in hopes of staying around for his wife and kids. It’s almost too much for a heart to take. I don’t have an answer for any of us when I so desperately want one for all of us.

Why are these things happening to them, to us, to decent people who try to make a difference in this world? “It is the way it is.” Is that an answer? “I don’t know.” Is that an answer? Regardless, my demeanor in front of Trip needs to be as his was to me – no impact just because I don’t get an answer. I need to be strong and comforting to him even when I’m confused and need comforting myself.

My lesson of the day: accept that there aren’t always answers that make sense. This lesson may have to be re-learned over and over again because putting this into practice is harder than knowing what the lesson is.

2011 Catch Up

Trip was diagnosed with Langerhans Cell Histiocytosis in January of 2011. He has damage to his skull, bones, gums, skin, ears, and brain, specifically the pituitary gland. The skull and pituitary gland indicate central nervous system involvement, which means the LCH is more likely to return and there is a risk for brain lesions to develop.

The pituitary gland damage will not reverse but so far the only thing they think has been affected is vasopressin, which is the hormone that regulates fluid intake/output - basically dehydration. It’s called Diabetes Insipidus (which is nothing like sugar diabetes) and he will have that the rest of his life. The replacement hormone he receives is DDAVP by shot twice a day. The hormone tells his kidneys to hold onto fluid in his body, so he stops going to the bathroom and stops being so thirsty when his DDAVP is on board. He has two “breakthrough” periods a day, each for about 2 hours, when the medication wears off and he drinks and urinates constantly. We are very lucky he still has a thirst mechanism.

We have become pros at managing his DI and know that one day he will be also. We spent weeks in the hospital getting his dosage right, then weeks of getting daily finger pricks to check his sodium levels and writing down everything he drank and how much he urinated. We are glad those days are mostly behind us even though the DI will always have to be managed.

Trip originally received weekly chemo treatments of Vinblastine for 6 weeks and then moved to maintenance every 3 weeks. He was also taking a steroid, Prednisone, which helped with his skin. At the end of the 6 weeks he had an MRI and CT scan, which showed little improvement, but we still moved to the maintenance phase every 3 weeks. Unfortunately, the Prednisone falsely led us to believe the treatment was working because of the improvement in his skin.

Boy were we in for a shock… the Summer 2011, we learned that not only was there no improvement in the disease, it had spread to all parts of his little body. Still no risk organs were involved, but now we had major tumors around the orbital areas. We were terrified he would go blind from the pressure to his optic nerve. It was probably the lowest of the lows in our year of this horrific disease. We were fearful for his eyesight and for the lack of being able to get this disease under control.

We immediately changed protocols and went to a Vincristine and Ara-C combination. It was awful. The Ara-C produced flu-like symptoms and gave him rashes. If you know about having a port (surgical implant where the chemo goes into his body), you know that any time you get fever you end up in the hospital to ensure there is no bacterial infection – even if they think the fever is a chemo side effect. The rashes on top of the LCH skin issues were awful and impossible to treat. Trip powered through those six weeks only to learn again that that protocol didn’t work either.

At that point we were seeing an eye doctor once a week to be sure his eye sight wasn’t getting any worse, an ear doctor almost every two weeks, weekly visits to clinic, monthly visits to his Endocrinologist, chemo every three weeks and still no relief.

Our HemOnc in Dallas started us on 2-CdA and told us she was leaving, but leaving us with Dr. Appel who has taken a great interest in LCH. After starting the 2-CdA we were fortunate enough to get an appointment with the leading LCH expert in the U.S., Dr. Kenneth McClain, who is located in Houston.

We took a “family vacation” in September to Houston. We went a day early to go to Galveston so Trip could see the beach (although not a very pretty one!). We got to go on a dolphin tour, which he loved, and he got to swim in the ocean. When we got in the car to leave the beach and head to Houston for the night he was so thirsty even though he hadn’t broken through yet. We finally figured out he had been drinking the salt water while he was swimming!!! Talk about a bad idea in general, but especially for someone with DI. I’m glad we didn’t have any issues from that and happy we didn’t have to get his sodium levels checked… I imagine they were scary high!

We saw Dr. McClain at Texas Children’s. Just being with him gave us a little peace. He felt confident that 2-CdA would work for Trip’s LCH. He told us that he felt certain Trip would never need a bone marrow transplant, which made us breathe a little easier. He did say that most people with LCH experience 4 recurrences before the disease completely goes into remission. I asked if what we had been through thus far could be considered as recurrences, but we aren’t that lucky. He expects once the disease goes away, it will come back 4 more times… YUCK. We learned Dr. McClain is starting some great genetic research that we agreed to participate in and he told us we are one of five families that have stored cord blood, which could be very useful in his research. (At this point with the knowledge of the disease and where they are in using cord blood for treatments, it is unlikely that Trip’s cord blood will ever be useful because the assumption is he was born with the disease. If they used it, it would only be putting the disease back in his body. I still hold out hope for one day there could be something useful to come from it.) Dr. McClain sent us home with a little higher dosage of 2-CdA than he was getting and the name of the drug we would use if the 2-CdA didn’t work (Clofarabine).

Fast forward to January… Trip completed all six rounds of 2-CdA that his body can handle without doing long-term damage to his platelets. We thought we could see improvement in his eyes. They were still protruding but not nearly as much. He had another round of scans: bone survey, ultrasound, MRI and PET scans. We were hopeful, but not too optimistic given everything we had been through.

The results of those were “some improvement but still active disease” all over his body. The orbital mass is still there but not nearly as big, there are still bone lesions and the obvious skin and ear issues. The MRI shows parts of the brain that have been affected but so far there are no symptoms. Trip has MRI ND CNS LCH… got that?? It is Neurodegenerative Central Nervous System Langerhans Cell Histiocytosis and so far the neurodegenerative part only shows up on the MRI. There are some people with this condition that exhibit signs such as loss of coordination, loss of speech, slower development, etc., and there are some who only have the disease on the MRI and not apparent in day-to-day life. We will have to start testing Trip to get a baseline to watch as he grows to see if there is any deterioration in his condition.

So we have results, we should jump into Clofarabine, right?? Nope.

Our doctors in Dallas consulted with Dr. McClain and even though he still said Clofarabine now, they did not want Trip on a drug so toxic. Clofarabine has harsh side effects and more times that not lands kids in ICU. Our team here has had good luck using a less toxic drug, Methotrexate, for LCH, so they decided that’s the way to go for Trip and we will have the Clofarabine to fall back on.

So here we are now… Trip will get Methotrexate every two weeks, but it means hospitalization during the treatment instead of outpatient clinic like we are accustomed to. It is important that Methotrexate leave the blood, so Trip has to pass it through his urine. Not so easy in a child with DI. We are admitted and monitored by his HemOnc and his Endocrinologist. The Methotrexate is given over a 24-hour period and they expect it to leave the blood within three days.

Trip will have another round of scans in about 6 weeks to determine if this treatment is working. If it is working, it may mean less time on Clofarabine or hopefully it won’t even be needed. The less toxic the better after a year on chemo and all the other issues that he will have to overcome because of this disgusting disease.

I think that brings us up to date on his condition and where we are. I’ve heard from other LCH and “chemo” moms that writing is a way of therapy, so I hope they are right. I still question everyday what the lesson is in all of this. We are learning lessons everyday on this journey and I will try to share them here. My question still remains, couldn’t I learn these lessons without my child having to suffer from a rare and horrific disease? Maybe one day I’ll find the answer, but right now I’m pretty sure it’s simply because life isn’t fair. “Fair” is a place for corn dogs and ferris wheels.