How we are...

MMMMkay... So everyone is asking for an update, so here you go...

Sophie is doing well. We are waiting for her next series of scans in the first part of April when she goes back to the Cancer Center. We are praying that her little body is lesion free and that all the scans are NORMAL! And, her headaches are better with the medication that the neurologist put her on. They called and scheduled her sleep study today. That should give us more answers relating to the fatigue issues.

She is amazing and watching her and her baby brother interact seriously warms my heart and makes me overflow with joy! She's an amazing big sister and has also managed an A/B average in spite of everything that's happened and even having been out of school a lot this semester. She even learned to swim this Spring (with the devotion of a loving grandma and a great swim coach).

My big boy!

I saw this (Aiden's birth announcement) on the bulletin board at my Dr's office today) It's hard to believe he was ever so small. It's two years ago exactly tomorrow that I was first hospitalized with him.

Aiden is walking and talking and exploring things like a normal two year old. Though he struggles sometimes with fatigue and sleeps more than a normal child due to the medications he is on, he's thriving. He knows so many words now. He loves to walk outside and play at the park. His favorite TV show by far is Sesame Street. He adores the segments with Elmo and he can name all of the characters in the show. Much of the names come out in two year-old speak, but those closest to him know what he means...

As for me, I am still having issues, but will hopefully get to see the end of these symptoms soon...

Goodnight friends,
J

Prayer

Dear God, be with all of my friends that read this today as they go through life. May their lives reflect like a mirror, the love You first showed us through your Son! Amen

Have a great day friends!
J

Help for Histiocytosis!

I am writing to you concerning a disease call Histiocytosis (Histio). There are a few types of Histio, however, they all share a common thread…being overlooked as a potential diagnosis. The label “Orphan Disease” is currently placed on Histio which leads to a lack of education at medical school and may place Histio in a category of, “I’ll probably never see this in my career,” for doctors currently practicing. My daughter was recently diagnosed with this disorder. She was only 8 at the time she was diagnosed, and she was considered one of the lucky ones.

                So what is Histiocytosis? Well, it’s a blood disease in which a person’s body produces too much of the white blood cell, Histiocytes. These cells then cluster together and attack various areas of the body. Skin, bones, lungs, liver, spleen, gums, ears, eyes, and/or the central nervous system all have the potential to be effected by this disease. Currently, Histio is not considered to be a cancer but there is an ongoing debate with regard to that. Some doctors do consider it cancer, while the majority believes it to be immunological.

                Generally, this disease attacks newborns, infants, toddlers and young children. It has been found in teens and adults as well. The current figures used to estimate the occurrence of Histio is “1 in 200,000 children and 1 in 560,000 adults.” However, it has been brought to my attention that these figures are European based estimates for the United States does not require for doctors to report to one central location the occurrences of LCH in their patients. Therefore, we do not know how many cases really are here in the US, yet we do not receive adequate governmental funding due to being categorized as an “Orphan Disease.” The more we speak out about Histiocytosis, the more people we find with Histiocytosis! For being such a “rare” disease, we are finding an adequate amount of people but I believe we will find even more Histio Warriors (those fighting Histio diseases) once we gain coverage.

                LCH can be diagnosed through various methods including (but not limited to) biopsy, blood tests, x-rays, urine tests, CAT Scans, and MRI’s. However, a doctor cannot see what they have not been educated on so even if the test shows something “questionable” they may not make the link to Histio unless they understand Histio. Misdiagnosis is a very big problem for Histiocytosis. Because Histio can present itself on the body in various ways, it can often be misdiagnosed as eczema, constipation, Multiple Sclerosis, chronic bronchitis, lipoma, migraines, Non-Hodgkins Lymphoma, staph pneumonia and the list goes on and on.

                Treatment for Histiocytosis includes (but is not limited to) surgery, steroids, various chemotherapy drugs, radiation, and bone marrow transplants depending upon the individuals needs and response to the methods chosen. While some patients do respond well to treatment many patients do need multiple treatments and still continue to deteriorate. If diagnosis takes too long, or if the patient’s body doesn’t respond well enough to the treatment the disease can, and will, claim the life of that child, teen or adult. We have lost too many lives to this disease. 

                The cause of Histiocytosis is unknown. We need further research to gain a better understanding of this disease so that we may help save the lives of these Histio Warriors battling this disease. The only way we will gain the necessary research is to increase our research funding; that will only happen if we raise awareness. Awareness is a necessity for two reasons: 1.) To increase our funds for research 2.) To reach other families searching for an answer for their loved one.

Will you join us in raising awareness for Histiocytosis? Will you speak of this disease to allow families to stand up for their loved one and gain a proper diagnosis to then receive the appropriate and necessary treatment to save their life? Please, one step for you will be leaps and bounds for Histiocytosis.

Thank you for your time. I hope to hear from you soon and start an informative and developing conversation. Feel free to contact me via the below methods and I’ve listed a few important Histiocytosis websites for your information.

http://www.txccc.org/pediatric-histiocytosis-program/

www.histio.org

Awareness Leads To Better Funding, Which Leads To Better Research, Which Leads To Better Treatment

And Ultimately A Cure!

 Thanks so much to Lelynn Pars for allowing me to use this letter to raise awareness for Histio. Her wealth of information on the topic is awesome! Thanks!!!

Have a great day friends!

J

Hi

Well, tonight I am really looking forward to going back to work. After going to the ER after work on Friday again, and being sick all weekend, I am hopeful that the new medicine will work! I haven't eaten in days and can't keep anything down. I have lost 7 pounds (though this isn't at all how I had in mind to lose it).

The kids on the other hand, have been very well cared for while I have been sick. They both seem to be doing great for the time being, which makes me immeasurably happy!

For now? Seeing as I am still sick and need my rest, I will close with this:

God be with you tonight dear friends,
And may you open your eyes to His grace all around you!

Goodnight,
J

Healing...

I obviously haven't written in a few days, I have felt terrible. I went through the work day on Monday and then had to call the doctor and was able to get into see someone at 3:45pm. I slept the entire day on Tuesday. Do I feel better? Notsomuch... but I hope that this will subside soon. I have pinched a nerve in my back and they also have diagnosed me with a digestive issue that I pray will just go away. The pain is pretty excruciating, and it persists tonight in spite of having gone to the ER on Wednesday night and being out of work today sleeping. I am absolutely exhausted and feel rotten still.

Somehow my cat, Fiona just knew I wasn't feeling well, and spent the day with me cuddled up in bed.

I am extremely thankful for my parents, who have helped me out the last few days with the kids. I am grateful for their help every day, but especially today, when I feel so crummy. Additionally, I am thankful for my friends and my boyfriend who have sent well wishes my way. I pray that I start feeling better soon. This certainly isn't the way I hoped my week would turn out this week!

Jeremiah 30:17 "For I will restore health unto you, and I will heal you of your wounds, saith the Lord."

Lord, I know you will heal my children as well as me today. I know you love us and will see us through another day as you have so many times before. Deliver us from pain, medication and into service in Your Son's name, Jesus. Amen.

Goodnight friends,
J

What I did for ME!

Well, tonight's blog post is going to be short, and for once, thankfully, it won't be completely about the kids. I am so excited about what I did for ME today. I went to Homegoods and bought a new duvet cover and shams for my down comforter and finally think I have the room I want. After over a year of living in our house, I love my room. It just feels right now... Take a look...

And... the best part of the duvet and shams is that they were only $30 bucks! I was thrilled. The ones I have been looking at were at least $150, just for the duvet.

The two pillows that look like they have flower petals on them were at Kirkland's Home for only $15 on clearance! Score! And, the other two I owned already.

The only opinion that really matters is the kids... he said it was Sofff...

Aiden and I had a great weekend. We went to the park yesterday and to La Centerra today. He had a blast running around and getting some good exercise. It was so awesome to see Aiden's mental development in action, because I think it's really taking off. His seizures, which I pray are under control after seizure on 3/6 and the EEG on 3/16 (which we won't know results on until next week). I just know by how he's acting that he's probably doing fine. He was ALL over the place. Acting VERY much like an almost normal two year-old. He still falls quite a lot, and there's a great deal of weakness still on the right side and the upper body as a whole, but nothing major enough to call the doctor on, I will just mention it at his one year appointment in May unless new symptoms develop. They did say to expect some weakness with the CP.

Well tonight, Sophie got home around 5 o'clock. We ate Chinese food and did 30 minutes on the Wii Just Dance game. Wii are both going to be sore tomorrow. I was just glad she was up to shaking her booty. Poor thing has been so run down lately. She's lying on the couch now, about to go to bed and can barely keep her eyes open. She had to wake up this morning at 6am and I heard from her that she was the acolyte at the early service this morning. I'm sorry I missed it. She said that going to three services with her dad is a lot of work, but she also said that she's feeling a little better this week (thank God). Hopefully, she will continue on the positive path and will continue to heal and won't develop any new issues between now and her next appointment, April 11th.

Goodnight friends,

J

Do not read this post if potty training offends you!!!

Today, I spent some quality time with my li'l man. He's growing up WAY too fast, and is just the cutest little guy (yes, I am biased). I am so proud of where he is now, considering it wasn't 15 months ago, where he'd just look at us and stare off into space. It's amazing what a difference a few months and some physical therapy and Epilepsy treatment have done for little A-man...

Well, we started out the day trying to make sure he understood that potty training was going to start today, ready or not. He simply shook his head and said, in his sweet little voice, "no". Then, I asked if he needed to go (because everyone says don't start 'til they're ready), and he ran, I mean sprinted to the kids' bathroom where he proceeded to sit down on his little frog potty and said, "poop", which of course, he wasn't even close to doing. I praised him for sitting down on the potty, though it probably would have helped if he had taken off his shorts and his diaper first. So, I then proceeded to take him into his room and I showed him his big boy underwear and his pull ups. I was told never to underestimate my kids, so I explained the whole deal to him. Whether not he understood anything, remains to be seen...

This is the smile that says, "I am going to give my mommy a run for her money!"

So, let the games begin.... We took a trip to Wal-mart because I needed to get out of the house. Cabin fever sets in when I don't go to work and lack inspiration to do much else but take a siesta... especially after the way I felt last night. So... We walked the aisles, while I explained everything around him. He is so fascinated by lights, and sounds it still amazes me. He really liked the book aisle. And, as I started looking, I saw an Elmo book. And before I could realize it, he was playing with it....

Elmo Potty Time Songs... REALLY?

Guess I should have worn my glasses to Wally World this morning, because I didn't even notice the title... So, after we graced the halls of my humble abode, I hid the book, hoping to return it ASAP. Well, before bedtime tonight, I saw my precious angel running to me with the book saying, "Elmo? Elmo?". It was like he KNEW I was hiding it... Argh... We were singing Elmo Potty Time Songs whether I wanted to or not.

There were songs about washing hands, waiting to go potty (I can only assume they mean waiting for #2, not like waiting in line at the Ladies' room at a concert), and there were songs about stopping what you're doing to go, and there's the most hilarious picture of Elmo. I can't make this up... promise!

I mean, WTH is he doing with his leg? Is he a dog? Or, is he just doing the pee-pee dance? This was just too funny NOT to pass on... So, as I read my son the "Elmo" book, choked back my laughter because I didn't want him to think that going potty is funny, I realized that these publishers know something I do not. Kids at Aiden's age (i.e. ripe for potty training) LOVE Elmo. They are sometimes addicted, like mine. The first thing he asks for when he wakes up is "Elmo", even before he asks for a sippy cup. I mean, the kid's got it BAD... So, they captivated the little munchkins with Elmo singing songs and torture the parents through singing them (because let's face it, how many times have you heard the song, "Boom, Boom, Ain't it Great to be Crazy" (one of the songs in the book) by the time you're two? Didn't think so. Neither had I. So, here's me... Half laughing, half crying, singing the lyrics "Boom, boom, Ain't it great to be a big kid" to a song I've never heard before, and Aiden's just laughing and pointing, saying, "Big Kid". Awesome.

On another note, Sophie sounded good tonight, like she was too busy to talk. She and her dad went to a movie today. I can't wait to see her tomorrow. Miss her terribly.

Thanks for reading, and happy Saturday!

Goodnight & God Bless you, friends,
J

SURPRISE!!!

Yesterday I had an awesome surprise! My mom and Sophie drove into town and took me to Carrabba's for lunch. It wasn't my birthday, or hers, just an excuse to get together and do something since Spring Break is almost at an end. Sophie was so excited (it was a surprise to her too) when they pulled up to my office. Just as they pulled up, I walked out the door. Though Sophie wasn't necessarily on the best behavior the whole time, it was good to have some together time without little man there.

After lunch, my mom took Sophie to the book store, and today she and my dad are taking both kids out for the day to the Houston Zoo. God help them... At least they will all be together. I wish I could be there, too, but this is our busy time of the month, so I can't take off. I sent them with hats and sunscreen and snacks, a change of clothes, Aiden's seizure meds and I'm praying that everything goes well as they venture across Houston to have some fun. I know they will be loved and sufficiently spoiled, as my parents have been known to spoil the grandkids a little bit....

I remember last year this time. I thought my life was so complicated. I was going through the process of Aiden's father signing over his rights and dealing with the initial onset of Aiden's seizures as well as his repeated viral illnesses that he sustained prior to having his tubes removed and pulling him out of a daycare environment. I thought it was tough then. I had no idea. But, now I am not leaning on my own knowledge or the knowledge of the medical community. Rather, I am trusting in the Lord to see us through. I just know that after everything we have gone through, He will be right there next to me through this other stuff too. I just know He will.

I am am looking forward to some much needed rest and downtime this weekend. I am hopeful that no one will end up sick. Sophie is supposed to go to her dad's for their visitation this weekend for the first time in a while. I am praying that he will remember to give her the medications that she has been prescribed and will stay the course with her care and will call me if there is cause for concern. I think this is the hardest part, not just having a kid that is battling LCH, but having to send her off a few times per month. I expect that Aiden and I are going to spend some time with the family or play at the park or both. He's been feeling pretty good lately. I am hopeful that he will continue to feel good and we'll have a great weekend and will be able to enjoy what is supposed to be sunshine and mild weather.

Dear God, May Jesus wrap his arms around her while she's gone and keep us safe and healthy this weekend. May you continue to help those who can't help themselves in Japan and the surrounding region as they brace themselves and deal with the aftermath of the earthquakes and tsunami there. Amen

Have a great weekend friends!

J

I'm RICH!!!

And we wait... for EEG results for Aiden and for Sophie's next round of scans. In the mean time, I am searching for ways to laugh more, savor more live more richly than ever before. And, I'm not talking about money. I am talking about living a rich life!!!

Today I was taken to lunch by a few women I really admire. We celebrated a birthday, we shared about our heritage, our children and ate excellent food. I was deeply touched by the love each of them has for their children. I think all moms who truly love their children are a gift like no other. I learned from my mom, who was a great role model, and still is. I know she gets tired and needs a break from us, but I appreciate and see her in each of these women I had lunch with. The mothers with grown children who are trying to help them be better adults. The woman with pre-teen children who worries about missing a homerun or other milestone. I can relate. Though my concerns are medical, I think the fact that we all four had that in common was really neat.

I trimmed Sophie's hair tonight and we laughed over and over about just silly stuff that nobody else would understand. I am so proud of the woman she's becoming. I don't want to hear bad news in her future, and I know God is watching over us, but if we do, I will know... know in my heart that I have loved her, cherished her and laughed and appreciated her enough. I try every day to love her more, appreciate the little things she does. Like watching American Idol and listening to her talk about how she could do what those kids do. She then asked what I want her to be when she grows up. A very philisophical question for a nine year-old. I told her I want her to be whatever makes her truly happy. She said, "No mom, what did YOU want me to be when I was a baby", and then I told her how she always sang and cooed so well that I wouldn't mind it if she sang for a living. She cracked up laughing, and said, "I knew you would say that"... We both had a good laugh... she laughs and my heart smiles.

Me and Sophie at her 9th birthday party a few weeks back.

This picture makes me want to cry. So sweet of my mom and Aiden.

Today was Aiden's EEG. Mom had to take him, but she said Elmo saved the day. She put that in the DVD player in the room, sat him down, and before he could see the machine, he said, "Head", like he just knew. Part of that makes me deeply sad, but another part is thankful that he now knows what to expect when he goes into have the EEG's. Mom dropped him by my office on their way home tonight. It was so great to see his little face when he saw me when he was getting off the elevator on my floor.... He smiled SO big! He grabbed me and kept putting his head down on my shoulder, it was so sweet. My mom walked into the office, and then I told her to go ahead and go, because she was tired. It was quite an ordeal to hold a two year-old down while he has a million little leads placed on his head. God I hope it's normal! He was so cute in my office. He got into my co-worker's leather chair (with a little help) and kept sliding down and giggling. It was cute, even if he was a little loud. Aiden was so tired tonight, he didn't eat much dinner. He drank his milk, and wanted to run around the living room. That is, until he's too tired. Then, he goes into his room, grabs his blankets (sometimes more than he can carry) and says, "Nigh Nigh?" and walks back toward his room. He's such a good baby. I turned up the baby monitor tonight so I can hear him breathe. I know it's weird, but every time he has a test like that, even if I can't be there, I go back to him in the NICU. And, I pray earnestly that he keeps healing and developing normally. God and some great doctors, and I do think he will. He's come so far already.

See.... :)

The same Lion is used in both pictures. Puts it into perspective how small he was at 3lbs 11.8oz.

Aiden at 22 months. 30 pounds of happy!

On some days, I don't know how I get out of bed. I just want to crawl back into my clean white sheets and hide. But, when I think of these two sweet faces, and how far they've already come, I know I can face another day. I like my job, my family and friends are amazing (yes, that includes you). I am living a rich life, just full of blessings. I am overwhelmed by God's grace, though I know he loves me through my iniquities. I know he's MORE. He's MORE than I need. He'll provide MORE than I need, and more than THEY need. He's going to see us through this, and I know my worry is normal, but it still hurts. I'm not going to lie about it. It just does.

Histio sucks, Epilepsy sucks, Cerebral Palsy sucks, and Hypergammaglobulunemia of prematurity sucks! But, God doesn't promise us that life won't suck. His promise is that it might be bearable with his help, if we let him walk beside us through our trials. And, on another note, Matthew 9:21 says, "She said to herself, "If I only touch his cloak I will be healed."" I know in my heart that God is the great healer, and that through Jesus, healing is very very possible.

I am RICH!!!!

Goodnight friends,
J

Family update...

WELCOME TO THE NEW AND IMPROVED BLOG!

I have redesigned the background to my favorite color, Red. I thought these flowers were cheerful... Well, tonight I will be brief. I am extremely tired and going to bed soon. I wanted to makes sure to get online tonight, and let you know that we did receive the blood test results from yesterday for Sophie. I am pleased to say that they were within normal limits. We will follow up in 30 days and will repeat the MRI, CT and PET Scan, but for tonight I am thankful that her blood work is normal and praying that nothing develops between now and then.

Aiden has his EEG tomorrow. Please pray that he does well and that his brain activity is normal. I am praying that my mom is able to get through it with him. They will be close to the office, just in case. Other than the episode a week and a half ago, he's been acting really normal. The neurologist increased his seizure medicine, so I'm hoping that's all he needed to keep from having more issues.

I have no prayerful insight or words other than I need sleep! Goodnight and sleep well dear friends.

Goodnight friends,
J

Dancing Cows, Fruit and Dinosaurs!

So, today was a busy one to say the least. We slept in 'til about 7:30am and then I got up and got things going. Aiden and Sophie both had doctors appointments. Sophie, at the cancer center and Aiden at the pediatrician to check on his bump.

We arrived at the cancer center and drove through quite a bit of construction on the way there. I am glad we know the medical center so well... for parking's sake at least. They told me to park in a specific garage so I could have easy exit in case she ever felt woozy after anesthesia or chemo. Thankfully today she wouldn't need either. As we walked in the new way, we were greeted this time by two giant cows. So cute! They were dancing like Disney Fantasia Hippos as we walked toward the elevators we needed to be in. It made Sophie smile. Good comic relief at that moment.

As we rode up the elevator, Sophie kept laughing and making funny faces in the elevator. I am so glad that none of this really seems to phase her yet.

After making funny faces for a few minutes, at about 10:30 and got a snack. Sophie sure seemed in good spirits. She is such a trooper, and to her, this is all just another doctors appointment. She has been to so many doctors lately, I just don't think it gets to hear anymore. It took some convincing for her to get fruit and a diet coke, though I knew that eating a full breakfast and then having tests run may not be a good combination.

Though she was in good spirits, I started to tremble as we got up to the waiting area. We checked in and noticed again many kids that were much much sicker than my Sophie. She has something going on in her body, but it's not even close to what some of these kids are going through. At about 11:30am, they announced that there were pizza and toys and cake back in the Fusion area for the children that were there. I thought, okay, I will let her dad take her back and they can get some pizza and I will lag behind so when they call, I can check her in. Just about the time they walked off, they called, and I registered her at the desk. They then gave us a pager and said I could follow them as long as I kept the pager with me. So, I walked with my mom back to the Fusion area, not prepared for what we were about to see.

The facility, amazing in its own right, was still terrifying to me. I never thought I would be the mom that would be taking my daughter to receive treatment for an illness like this. I took a deep breath and felt thankful, but had great empathy for what these little guys and gals were going through. Though mine is not among the sickest of kids (and I pray that she never will be), it was still terrible to see the ones who are suffering. There was a boy with a wide smile, big brown eyes, no hair and a scar from ear to ear across the back of his head. He wanted a piece of cake really bad and dug right into the piece he was handed. He had the biggest brown eyes... Then there was a little girl, probably three or four,with sandy blond hair and with a nurse and her dad by her side. She was screaming, saying, "It hurts, it really hurts!" until they were able to calm her down. It brought tears to my eyes.

Though I realize that chemo may come eventually, for now, our visit was relatively straight forward. 154 days into treatment, the "fellow" came in and examined Sophie and asked how she had been doing. We talked about her history and then the main specialist came in. He is a world renowned expert in this disease, and it was great to have him look at all of us and explain that, though they needed more tests in 30 days, that blood work was all that was needed today. They said that they would probably want to repeat the CT, MRI and the PET Scan because she's having the symptoms she's been having (fever, headaches and fatigue). They also all agreed that a sleep study was a good idea due to the extreme fatigue she'd been experiencing. The doctor also explained to us that the first 12 months post-op are critical for the children with a single bone lesion (hers was removed on 1/28/2011). He said that the recurrence rate is 20-25% so we need to monitor her carefully this year. He said that they don't prescribe chemo frivolously and feel it's something to be entered into cautiously. I totally agree. I'm frustrated because she still feels lousy, but also know that today was a relatively good day.

I am also praying for Sophie's dad tonight. I don't think he realized the gravity of the situation until today and I also think he's having a hard time coming to grips with the fact that her team all just wants the very best for her, which means a united front on our parts. We have been divorced for six years and I don't have any bitterness about what happened anymore, it's an entirely moot point in the shadow of what's going on with Sophie.

Tonight, I am so thankful that after going through the day, Sophie's still smiling and is now snuggled up watching the Land Before Time (the 90's cartoon with the dinosaurs) on Netflix. She's laughing and saying, "Yep, yep, yep!" hehehe...

Aiden's visit was less eventful. The pediatrician thinks his cyst was attributable to cradle cap, but I don't know if I agree 100%. She said to watch him carefully for color change or a change in the firmness of the bump. She did say she understood my concern and why I would want him to be seen given what we've gone through with Sophie. I am glad she was able to take a look at him. I wonder what will come of the bump. He doesn't seem slowed down by it, though he was asleep by 6:30pm, which is kind of odd. He usually doesn't go to sleep until 7 or 7:30, but he didn't have much of a nap today, so we'll see if he's up all night or not....lol...

For now I am counting my lucky stars that they are both all right. God is good, even though we really don't know anything new, other than, right now... no chemo! Yay!

Goodnight friends!
J

Oncologist Tomorrow and Weekend Recap!

This Friday and this weekend were filled with more sickness unfortunately. Both of the kids had fever all weekend, and I was just praying like hell that nobody ended up in the ER. Both the kids had to go to the doctor on Friday. Aiden with a sinus infection and Sophie called me because she had to go home from school sick. Her headache hurt so bad, she just couldn't take it anymore. It was a hectic day Friday, but once everyone started on their antibiotics, it seemed like they were feeling a little bit better. Sophie is still SO tired, though.

Sophie felt well enough to go to my brother's niece's horse show on Saturday, where she was just in awe of the goings on around her. She LOVES horses. I mean, this girl is borderline obsessed. An example of what I hear all day long is, mom do you know which breed is the one that they use in snowy weather that's able to haul heavy loads?" I say, "uh, no", to which she says, "it's the MORGAN horse" (in her sarcastic tone) and then she giggles with the laugh that is uniquely hers. I was happy to take her, though I was on guard for how long she'd be able to stay out.

Sophie. she was so overwhelmed and excited. She said, "Mom, look at EVERYTHING!"

Sophie and my brother's niece (on the horse) and Benny the horse.

Sophie and my niece outside the saddle shop.

We left before my brother's niece finished her round because Sophie's cheeks were getting really red, and that's usually a sign that her temperature has gone up again. She was crankier by the minute, and I knew that it would be time to go ahead and go home. Not to mention, Aiden had been so sick the night before, it was time to go get him so my mom didn't have to sit with my sick kiddo any longer. So, we left the horse show. In the car, I asked Sophie what she thought about the horse show. She said, "I was moved." It was so sweet.

Later that afternoon, Adam came into town. It was so great to see him. He is such a wonderful man. He never minds chipping in and he lets me relax and even cry when I need to. It's awesome to have that kind of support. We got fajitas for dinner and we took Sophie (once she collected herself a bit from the horse show) over to the store and she got a new DS game. She was so excited because now she'd have something to do while waiting in the doctor's offices. I know she's frustrated... So am I...

Anyway, that evening after dinner, we were playing around with Aiden, and I noticed something behind his ear. It was a small bump about 1cm. It was either a cyst, a swollen lymph node or something. I am sure it's nothing, but when you've been through an LCH diagnosis, it's no small thing when you notice a cyst on another child's head. Here is a photo of what it looked like. I am so glad I took the picture. I didn't have the foresight to do this with Sophie, though I wish I had...

There's the bump. About 1cm in length/width... I am SO calling the doctor on Monday!

Speaking of LCH, we are going to see the oncologists to get Sophie's results and to follow up with them tomorrow. She's nervous and the time change hasn't helped (going to bed an hour early is never an easy adjustment). She said, "Mom, are they going to stick me?" I nervously replied, "I don't think so, I surely hope not!" My mom and my ex-husband are going to go with us. It will be good to have reinforcements there, but I have no idea what they're going to say. She's got extreme fatigue and fever daily (low grade) as well as severe headaches and weight gain. The neurologist has recommended a migraine medicine for her, and we're working up to her dose over a weeks time, but this is no easy task. Seriously... I am worried sick. I am prayerfully optimistic that they will have some answers tonight. Sophie asked me for more water tonight before she laid down to sleep. She's never this thirsty. I worry that Diabetes Insipidus is setting in... Scary how a kid asking for another cup of water at bedtime could scare you, but that's the fear of every LCH mom, I think. Her pituitary tested normally, but the onset of DI can be sudden, from what I've heard. Sigh...

On another (more positive) note, I have given up chocolate for lent.... That's right, people, ME! I have given up chocolate and am trying so hard to stay focused. I am tempted every day but I know that it's what is best and will be an extremely teachable thing for me because I had become so accustomed to having a piece of chocolate here, an M&M there... It was sick really. And, now that I have given up chocolate, I may be a little cranky now, but it's going to be okay. It's the least I can do given what Jesus did for us on the cross. This Lenten sacrifice (albeit minor) is a great example to me of what Jesus went through as he was tempted during his 40 days in the dessert.

Additionally, as I contemplate what we're facing, I'm repeating words of comfort again... Tonight, I will pray a Psalm that I have prayed continually for years now.

Psalm 23 NIV
A psalm of David.
 ¹ The LORD is my shepherd, I lack nothing.
 ² He makes me lie down in green pastures,
he leads me beside quiet waters,
 ³ he refreshes my soul.
He guides me along the right paths
   for his name’s sake.
⁴ Even though I walk
   through the darkest valley,
I will fear no evil,
   for you are with me;
your rod and your staff,
   they comfort me.
 ⁵ You prepare a table before me
   in the presence of my enemies.
You anoint my head with oil;
   my cup overflows.
⁶ Surely your goodness and love will follow me
   all the days of my life,
and I will dwell in the house of the LORD
   forever.

God, I know you can hear the cries of my heart as I worry about my children. I know your angels are protecting them and that You will see us through everything. I just know you can see into my heart through my tears and anxiety about the future. Tonight, I want to lift up all the other Histio warriors that are fighting this disease. I want to lift up their families to you tonight as they rifle through bills or cry in each others arms about the unknown that lies ahead. This is a whirlwind of emotion I wouldn't wish on anyone. I know you will help me find the strength to get through this, you've already given it to me, I just have to lay worry aside and grab hold of the tools and the unconditional gift of grace that you've given me, Lord...

I also want to lift up the families of those who perished or are displaced due to the earthquake and tsunami in Japan over the weekend. Help them to see your presence in their lives, Lord. And, help aid reach them quickly and with no strings attached. Just like your grace.

In your Son's precious and Holy name, Amen.

Goodnight friends,
J

The Roller Coaster...

After Sophie landing in my bed at 3am and having a temp of 99.5 and giving her Tylenol because she was complaining of a bad headache and just feeling bad, I let her sleep with me. She has been up in the middle of night so many days lately, what’s one more? The school nurse called at 9:05 am and said that Sophie was complaining of a bad headache and though she didn’t have a high fever, she was crying because her head hurt so bad. I felt so bad for her. I called my mom and they arranged to bring her home. This is the first time in a while that the headache has gotten so bad that she didn’t want to stay at school.

Aiden woke up with 101.6 temperature and was still very congested and not feeling well. I gave him some Motrin and though “Motrin Baby” acts like a very different baby, he is still sick too. My mom is home with him today as today was a very important day at work for me. I love my job and have missed so much time, I can’t be out (especially on days like today). I am giong to be out on Monday with Sophie at the Cancer Center, so being here today is a must. My heart aches, but I am doing my best to keep my mind off of things and finish the tasks at hand. Aiden has an appointment with the pediatrician at 11:20, so we’ll see how that goes… I’m sure it’s just a bad ear infection or sinus infection. Aiden’s condition worries me, with what happened on Sunday evening, but hopefully we will have some answers to what’s going on with his brain functionality when we get the EEG done on Wednesday the 16^th at the Neurologist’s office. They usually don’t have results right away, but hopefully we will know something sooner than later. This week he’s been so happy and active, in spite of not feeling well. He is a boy after all.

Meanwhile we are in a holding pattern until Monday night. I am praying that everyone feels well over the weekend and nothing major happens and we don’t end up in the Emergency Room. I am thankful that the TCH ER in Katy is now open, so if we need to go there we can. I am praying that so earnestly, I know God can hear me. My heart is open to His grace and healing. I just know he’s there for us. My friend at work and I were talking this morning and I explained to her that I think of life as a roller coaster. You are in a seat so stay in your seat and ride the ride, and you better not stand up, because you might fall out and get hurt. I think of the harness that goes down over the shoulders as the gift of God’s grace holding us in and keeping us safe. Still, there are going to be scary parts along the way and you might even get a bug in your eye, but you will be held in the car as long as you don’t stand up. And, even if you don’t hold on His grace is still holding YOU in.

God, Keep holding us in the roller coaster that lies ahead. All of us, Lord. Protect us, heal us, and deepen our faith in You along the way. I have never leaned on You more than I do now. I am thankful that you are here for me and that you listen to me even if the answers to my prayers aren’t evident and that sometimes you’re telling me to "Be still, and know that I am God" (Psalm 46:10). I will not doubt Your eminence and omnipresence. I will be still and listen for Your will to be done.

Have a good day friends!

J

Big news!

I got an email today from one of the media outlets that I sent the article about Sophie's Histiocytosis to last week. They want to use my article and feature it on a three page spread about Sophie's condition. It seems as though they want to help raise awareness. The main feeling I am having about this is that I am so happy that I will get to share her story with more people and potentially raise awareness about these diseases. Additionally, I am humbled and excited by the thought of being published in a real magazine. My prayer is that they will be able to get enough people excited about Histiocytosis that there could be a real movement to help.

On another note, we had fun today at "taco night". I thought that my niece and nephew and daughter were going to put together a restaurant style atmosphere at my mom and dad's house, but instead, we went out. I think my mom was tired. I showed up to see them with a little gift for mom and dad and I think that went a long way to helping her feelings. Every once in a while, a girl's gotta say "thank you".

I checked the messages at home and they called to move Sophie's appointment on Monday back one hour. We've been waiting a month, what's one more hour! I am hopeful that we will get some answers and direction on Monday at her appointment. She had a fever and headache again today. She didn't feel like doing much, and it's just really getting old.

The other big news is that my BF and I have been together for 5 months today. I love him SO much. I am the most blessed girl alive because he is in my life. He has changed my life in immeasurable ways. Thank you Adam!!!

Goodnight friends,
J

Neuro Visit and WHAT A TEAM!

Today was a half day of doctor time for us. I woke up exhausted and the most precious babysitter in the world arrived from the service we use two days a week to help with Aiden. She is awesome, and is CPR and First Aid trained which helps. She didn't even hesitate to say, "No problem" when I explained to her about Aiden's episode on Sunday night and how he might be on the upswing of more seizures as we get his medicine regulated again as he continues to grow and fight the Epilepsy. He's such a happy boy, but she did say he slept more today. The neurologist warned us that it might be a side effect of the increased dose of the seizure medication.

After working a half day, I ended up at Sophie's school in time to eat lunch with her. It was so much fun! She's been begging me to eat lunch with her for MONTHS, so I was more than happy to oblige because I had gotten to her school a little earlier than I had thought I would.

Sophie was totally happy. She even got to introduce me to her friends!

After lunch at the school, they said I had to go back up to the front office to check her out since I had just been "lunching" and since I was checking her out, I had to follow the proper protocol and sign her out. I understood, so I went to the front office and signed her out. I stood there for a few minutes after they called her, and as I waited, I heard this loud alarm go off. It was a fire alarm! The way the office scrambled I could tell that it wasn't a drill, and they said, "you all have to go out to the front of the parking lot. NOW". So, I complied, but thought, "Oh great, my kiddo is on her way to the front office and an alarm is going off"... I took a deep breath and walked to the front of the lot and stood there for a few minutes with the front office staff. I didn't say much, just prayed that all of the kids would get out safely and that no one was hurt. Especially my sweet girl. It was about this time that a teacher in her grade was walking with her to the front of the lot where we stood. I tried to act all nonchalant, but I wanted to hug her and say, "Thank God you're ok!", but I didn't... I just calmly walked her to the car and put my arm around her. We both looked for smoke as we drove away. Someone said that they thought someone had set off the smoke alarms while making their lunch. Funny how we never got an email from the school about what happened or anything.

We drove up to the neurologists office and Sophie was red-cheeked and scared to death, I think. She hates doctors (understandably so by now) and she didn't want to get poked and prodded again. She's already been through so much. This neurologist has changed our life. He's incredible and takes the time to really listen to the patients and the moms. I have seen first hand through my son, that miracles can happen with the help of good doctors and he's right at the top of my list. Today's another reason why. He got the breakdown of what's been going on with her headaches and we explained how we have walked the road of LCH for only a few months, but that we'd be going back to the cancer center on Monday for our follow up and to review results. He was very interested and he just looked at me in shock as I told him that this is Aiden's big sister, you know Aiden's the one we spoke of on Sunday night that had the weird Epileptic episode and you increased his medicine. He said, "okay, that's how I know you... Aiden... you're a single mom, too, right?" I nodded. Sophie said, "and she's MY mommy."  She was so proud and he said, "You know, you're lucky to have a mom who's so organized, as he thumbed through all of her test results that I had compiled into a tabbed book with a worksheet of her office visits attached. Call me anal... I don't care. It's something I can DO for my kid... When I feel like I can't do much.

On a clinical note, here's the breakdown of what happened. He reviewed the MRI, CT, PET Scan, three biopsy reports, blood work, etc.... He assured us that nothing major is wrong with her brain. Good news! He said that he understood our frustration because we keep calling the doctors with the cancer center, and they say to send her to the pediatrician for her headaches and the pediatrician tells us to go to them. I told him that when I think headaches, I thought of him for what he has done for Aiden. He thanked us and said that he could help. He has recommended two medicines to help with her headaches and wants us to keep a headache log. He also said that he wants to do a sleep study on her. He said that some of her symptoms lead him to believe that she's not getting very good sleep at night. Doesn't surprise me one bit. And, since her immune system HAS to be strong right now, he recommends that we do a sleep study. She didn't like the idea, but since it's just some leads on her, and nothing invasive, she thought it would probably be alright...

He then asked Sophie to leave the room and go talk to her MA and once the door closed, he looked at me and said, "How are you even here right now? How are you smiling and having such a positive attitude given everything you're going through?" I said, "I don't know" and started to cry. For a person who has gone through the journey with Aiden and now with Sophie too, he really gets this mom. He explained to me that we needed to probably get another biopsy of the skin, because he too thought that maybe since they didn't do the immunostains that it might hinder an accurate diagnosis. He recommended that we receive a recommendation from the cancer center about what dermatologist they recommend in the medical center. He then said that he would be an advocate of sorts and try to help us as well as he could. He said he was so sorry that this LCH diagnosis had been handed down. I said, "I know we'll get through, through the grace of God we will" and dried my tears. I told him that I was going to fight tooth and nail to make sure she is comfortable and as normal as she is able to be. Her condition may deteriorate and he did warn me of that, but he also said that she looked really good given her diagnosis and he was hopeful for a positive outcome given how strong she is. I told him that I was worried that something is still going on in her body. With headaches and fever every day and not even wanting to play outside when the weather has been gorgeous, well that's just out of character for her. As I walked out to find Sophie, the doctor turned to me with tears in his eyes and said, "There just aren't words... You guys hang in there, and I want to see you in a month." I got a little choked up again, said "Thank you" and we went to the front desk to check out.

There was more said that I can't remember right now, I am sure in time I will. What mattered was giving him the result and his promise to email the cancer center tonight so that he and the other doctors were communicating and hopefully reaching some understanding about what the potential next steps will be for her. Something is still wrong and I pray that the headaches will be somewhat pacified by the medication he is recommending, but I realize that they may persist. We just have to take it one day at a time and know that God is here. With us...

As we drove home, I called a few family members to give them the "cliff" notes version of what had happened. I didn't want Sophie to have to hear me repeat myself over and over. I found out that my mom and my niece and nephew were painting pottery, so we went and joined them. The girls had a great time.

My sweet niece and Sophie (R) painting their pottery.

Sophie's finished puppy. She's so creative.

I am praying for health and healing every day. I am tired, but pressing on. I am grateful to all of you for reading this and for the kind comments and cards and things you have all sent to encourage us. This is likely to be a very long road, but we're all in it together. My family, friends, God... What a team we are!!! We can do this!!!



Goodnight Friends,
J



Waiting for the other shoe to fall...

I have put together a packet of information for the Neurologist this morning. Although I already know him because of Aiden, Sophie will be a new patient today. I have included all the tests she has had done in the last few months including the Biopsies (2), the Skeletal Survey, the CT of the Chest, MRI, PET Scan and the blood tests as well as a worksheet that outlines everything as a summary to what she has been going through. Sophie’s headache persists and mom said that when she was playing with my niece and nephew after school yesterday, she only lasted about 15 minutes and then she was too tired to do anything more. She does have an ear infection, but usually she has a higher energy level even with an ear infection, especially when it’s my niece and nephew.

I am also wondering something. We got the biopsy back from the dermatologist, but I am curious as to why their lab didn’t see the need to do the “slide staining” that the head and neck surgeon said was necessary to determine whether her skin rash was LCH or not. I have placed a call for the nurse just to ask. Her rash is still itchy and uncomfortable and the steroid creams we’ve been using are not helping whatsoever.

Clinically, we’ve been searching for treatment for this issue for 151 days. It’s frustrating and tiring, but I’m determined to find answers to help my daughter deal with this disease. I want to make sure that the biopsy site is clear of LCH material if there is any way to be sure. I want to make sure that they “nodule” isn’t something more that is still in her head and I hope we get an answer to that today.

I will update more in a little bit…. We’re looking for prayer right now and I am grateful for each and every one of you that are sending up a word of healing to the Big Guy right now.

I've sortof been waiting for the other shoe to fall... Either we'll be okay or we won't, but we'll get through it either way.

Thanks!

J

150 days in!

Well, I haven’t written in at least a day, so I wanted to sum up and catch you up with what’s going on. Sophie (my 9 year old) is on day 150 of dealing with “Ouchie the Bump”, and the subsequent diagnosis of Histiocytosis-X, More specifically, Langerhans Cell Histiocytosis. Sophie has been dealing with constant headaches, fatigue and fevers since 2/02/2011, and some before that. She came down with a sinus problem and ear infection on Sunday evening and was at the pediatrician yesterday, who gave her antibiotics as treatment. She is improving and is at school today though she may end up calling wanting to come home before long. She’s exhausted, poor thing.

I got a call this morning from the Neurologist’s office. They were saying it was going to be April 7 before they could see her as she would be a new patient, but he had a cancellation, so we are going tomorrow afternoon! I am excited because I think he will be able to shed some light on what is going on in many of her test results as well as explain some of the neurological aspects of LCH and what the neurological community thinks about the disease and what to watch for. I am optimistic about tomorrow.

This doctor is the same neurologist that Aiden has been seeing for the last year and he’s completely changed our lives. He’s an excellent doctor and takes the time to talk to the kids and to the parents about what’s going on before running a bunch of tests. He diagnosed Aiden with Cerebral Palsy (mild) and Epilepsy and was the doctor to first prescribe Aiden with the medication that was able to keep the seizures to a minimum. We have recently had to increase Aiden’s dose of the medicine he’s on, but I think he should level out soon and get used to the new dosing. He’s 22 months and doesn’t yet understand what all is going on with his body, I don’t think. He’s up to 7 cc’s a day total, and his body just needs to adjust.

Sophie is hanging in there, she’s just frustrated too as am I. We don’t go to see the Oncologist at the cancer center ‘til Monday. It’s been over a month we’ve been waiting to have the test results read and find out a prognosis and what to expect and because the future can be very uncertain with this disorder.  

Contrary to what some people think, Langerhans Cell Histiocytosis is a disorder/disease that Sophie will carry for the rest of her life. It’s not a illness like a cold virus or a stomach problem that will go away with treatment. Langerhans Cell Histiocytosis can go into remission, but it is a disorder in which the patient’s own cells are attacking itself instead of fighting infections. There is no known cause, and it can come back very little notice even if it does go into remission. There is very little known about Histiocytic disorders because they affect so few patients yearly. It’s considered an “orphan” disease because no one knows how to classify it.

On an emotional note, I am tired. Tired, tired, tired… I am still plugging away at work every day and my company has been incredible and understanding given that I have had to miss some days this year. I hate being away from work, but I know that right now, my family has to be my number one priority.

Hope is here. I am not giving up. I will not grow weary because I know Christ will see us through this.

As we approach lent, I propose what the Upper Room proposes… Talk together about special ways you can observe Lent, both individually and as a family. (For instance, will you add to or begin a daily family devotional time? Will you give up desserts or snacks and donate the money you would have spent on these items to a local food bank? Will you limit television watching to give family members more time for prayer and Bible reading or more time to spend together? Will you perform some needed act of service for a neighbor or invite someone who is lonely to share a meal? Will you invite a friend or neighbor who doesn’t usually go to church to attend with you?)

God Bless You

Talk to you soon!!!

This picture isn't recent, but I just thought it was too cute not to share!