Celebrating!

We did it! Clicking my heels! Doing the happy dance! Simon managed to stay out of the hospital for the entire month of January! It was his first hospital free month since September! Simon has finally kicked his cold. He has been cough free for 3 days, and he hasn't needed a single tissue today. On this journey, we celebrate the little things! Managing to stay out of the hospital while fighting his latest virus is a huge mile stone.

Simon before transplant and Simon now.

While still not feeling great, Simon does appear to have turned the corner on this virus. His cough is less, he is going through far fewer tissues in a day, and he ate three meals yesterday. Rejoicing in the baby steps.

It has been three years since Simon was diagnosed with severe aplastic anemia. Where has the time gone? He was a month and a half shy of his 11th birthday. He will be 14 in March.

Looking back at his pre-transplant pictures, it is hard to recognize him. He has grown several inches since last May, and the multiple rounds of steroids to combat his graft versus host disease has caused his face to swell up like a balloon. He has stretch marks every where. His legs, his arms, his back, his belly. The stretch marks will eventually fade, but never go away. Right now, they look raw and sore. His face will eventually return to normal and he will lose his extra chins. It could take months from the time he is finally off the steroids.

The good news is that he is on his last dose of steroids. The plan is to have him completely off the steroids by Wednesday. Then we pray the graft versus host does not return. In spite of all his swelling and his growth, he has not gained any weight. That being said, the next worry would be rapid weight loss without the streoids.

This whole process is a balancing act. The immune suppressing drugs to battle the graft versus host put him at increased risk for infections and viruses. The steroids battle the graft versus host, but also further suppress his immune system and play havoc with his body, form weakness, to swelling, to increased blood pressure, and even diabetes.

I asked the doctor when Simon gets to be a regular kid again. Simon will lose one more summer to a compromised immune system. Travel and activities will be limited this next summer, but at least he won't be stuck in the hospital. By the time he can really get out and participate fully in life again, he will be old enough to learn to drive. WOW!

God has been so good to us through this whole process. He has given us the strength to make it through each day. He has carried us through the tough times and held our hands through the good. He has blessed us beyond measure through the people we have met on this journey. He has seen to our every need, even before we knew what we needed. Some days are easy, and other days are hard, but God is always good.

Missing: One Groove.

Simon and Dr. Quinones. He is the doctor who let one of his patients paint his nails. We love this guy!

Today I am having one of "those" days. I just can't seem to find my groove. From the time I got up this morning, all I have wanted to do was crawl back into bed. I am feeling tired and beaten down.

Last week-end at home was wonderful, but it was also a reminder of how much needs to be done at the house to make it a safe environment for Simon. Before we came up to Denver last May, I spent close to an entire week tackling Simon's room. I de-cluttered, removed things that didn't belong in his room, bleached all his legos and other bleachable toys, and did a heavy duty clean. I also super cleaned the kitchen. All the cabinets were wiped down, inside and out, pantry, food cupboards, and spices shelves were sorted, wiped down, and organized.

After 8 months away from home, Simon's room is still in good shape. The kitchen is ready to be super cleaned again, as well as the rest of the house. I started tackling the master bedroom last week-end, but left it looking like it had been hit by a hurricane. At the time, I had every intention of returning to the job this week-end, but circumstances are going to prevent that from happening.

Yesterday, we spent were at the clinic from 8:30 until about 12:30. The news was mostly good. Simon's adenvirus is gone, which means that yesterday was his last round of Cidofovir. His counts are all holding steady. His steroids were reduced, and the doctor plans to do away with them all together next week. Simon's blood pressure was high, as I suspected, so he is back on his bp pills twice a day. (Last week, he had the doctor I shall call Dr. Optimistic. Really nice, but moves way too fast, given Simon's history.)

Simon has been fighting a para-flu virus for about 3 week now. That fact that it hasn't landed him in the hospital is a huge milestone. His lungs are sounding clear, which is one of the big concerns. Although his symptoms aren't getting worse, they also aren't getting better. Runny nose, cough, general malaise. Yesterday morning, he ate a big breakfast, but hasn't eaten much since. He says he just isn't hungry, which is so not like Simon! He has been flirting with a fever all day. His t-max so far has been 99.7. If he hits 101, he will be back in the hospital.

Because of Simon's health, and a bit of snow predicted for tomorrow, we will be staying in Denver this week-end. Simon isn't up for the drive home, and I am more comfortable being 5 minutes from the hospital with him feeling so lousy.

I guess you could say that I am feeling overwhelmed. Overwhelmed by the past 8 months, and the 2 and a half years leading up to his transplant. Overwhelmed by the future, and all that needs to happen as we move forward. Overwhelmed by the here and now. Will we be heading into the ER tonight, or will Simon be able to make it through January without a hospital stay? August and September are the only months, since May, that he hasn't had a stay.

Yesterday, I read an article about the benefits of music. Music can keep us in the present moment. I am once again a renter of a beautiful viola. When I feel like I am drowning in my circumstances, my viola becomes my life raft. I can lose myself in the music, and I always end up feeling better. What are some other ways to stay in the moment, rather than getting lost in the past, or in worries of the future?

Week-End at Home

It is great to be home! We drove down on Thursday. That night, I finally got to see Breaking Dawn with a dear friend. Friday, I took Simon to the clinic here in the Springs to have his port accessed. It needs to be flushed once a month, and the nurses down here are amazingly talented at it. Up in Denver, the nurses have a difficult time with it, and MANY have tried.

Yesterday, I began the tedious process of sorting through the junk in my room. Not a fun task, and I have a long way to go, but at least I was able to make a start. I have so much more de-cluttering to do, but it will mostly have to wait until we move back down here.

In the afternoon, I ran errands with mom. Simon enjoyed quiet time at home. He has especially enjoyed visiting with Warren, his oldest brother. This evening, the two of them spent over 2 hours talking about super heroes. It is wonderful to listen to them enjoying each others company!

Today, mom and I went grocery shopping, and then Ezri and I attended a reining horse clinic with friends. It was very educational. I am looking forward to being home and attending more clinics and getting going in the 4H group.

Tomorrow, we will be heading back to Denver. Our neighbors at Brent's Place will be moving home this week, and we want the chance to say good-bye. Their 3 year old boy has finished his treatments and is doing fantastic. We will miss this family, but are very happy for them.

The picture is of Simon and his two older brothers, dressed for their Aunt Brenda's wedding. Warren is now 20. (Today was his birthday.) Oliver turned 16 at the end of last month, and Simon is 13. They grow so fast!

Claustrophobic

I am beginning to feel the walls closing in on me. After 7 and a half months, I am feeling near my breaking point. There is no escape, no place to go. We need to move home, ready or not.

Home, with all its challenges, is a place where I am not alone. Where I can get out of the house when the walls are squeezing the life out of me, even if the kids aren't up to going anywhere. Home is a place I can leave to share a cup of tea and fellowship with a friend, or go see a grown-up movie. Home is a place with wide open spaces. It is a place with furry cats to cuddle as my stress melts away. It is a place full of puppy dog kisses to help mend my broken heart. Home is where we are a family again, intact. Home is a place where I can drown my sorrows in slightly off-key music without worrying about disturbing the neighbors. Home is a place where a cold is just a cold rather than a prison sentence.

Surely, there must be more to life than cleaning and laundry and hours at the clinic. I dig through the hidden places in my mind, trying to find joy. It must be there, hidden amongst the clutter.

Today I am especially missing my family, missing my pets, missing my freedom, missing my music. I am ready for the next stage of this journey. I am ready to move home and begin the process of putting my house in order.

I am feeling tired and spent on this day. I can't seem to stop the tears from flowing. I guess it is just one of those days. Maybe I will go back to bed and start over.

Simon still has the last remnants of his cold. He is sleeping more than usual, but seems to be on the mend. He still has a bit of a runny nose, and he is coughing a bit at night. He doesn't yet have enough energy to go out and do anything.

Ezri has been symptom free for over 24 hours, but isn't allowed outside of the apartment yet. Beau has been symptom free for the last 4 days, but he is at home. I am fine physically, but emotionally spent.

Tomorrow will be another long day at the clinic. Maybe the kids will feel up to a movie or something afterwards. I will find out how long everybody needs to be symptom free before we can enter civilization again. If it is more than another day or two, we may spend the time at home, for the sake of my sanity.

Yesterday's agenda: Be as absolutely lazy as possible. Mission accomplished. Watched a lot of tv, took naps, etc. . . We are on the mend. Our new goal is to be well enough to have a week-end at home next week-end. It would be great to be home to celebrate Warren's 20th birthday. (I can't really be that old, can I?) Simon flirted with a fever again. His high was 100.2, .8 degrees away from a trip to the ER and another stay at TCH resort. We will be watching his temperature closely today, but I am hoping he has turned the corner.

Today, we were all feeling well enough to leave the apartment. Nothing exciting, but we did get some groceries. Simon's temperature was normal all day. His cough sounds a bit deeper tonight, but still pretty mild. If he can make it through this cold without being admitted to the hospital, I will consider it a huge step forward.

Day Plus 218

Another busy day here in Denver. A wonderful Bronco themed breakfast prepared by the Brent's Place staff got the day off to a good start. We spent the afternoon at the clinic while Simon got his monthly IVig. His counts all look good, and liver and kidney functions are good. He did test positive for parainfluenza, but not sure if it is a new virus or the same one he had back in early December. Ezri now has the sore throat, runny nose, general icky feeling, and I woke up with a stuffed up head. We are going to just hang out at the apartment tomorrow and try to recuperate from the busy week. If we are feeling better on Sunday, we will head home for the day.

Simon's doctor, Dr. Ralph Quinones, is a wonderful man. When he is in the room with Simon, he gives Simon and I his undivided attention. He never gives the impression that he needs to be somewhere else, or that he is in a hurry to leave. He takes the time to visit with Simon, and he always answers my questions thoroughly. Today, he noticed Ezri's nails, painted blue and orange to celebrate the Broncos. He pulled out his phone and shared a picture of his nails, painted bright red.

He has a patient on the bone marrow transplant unit. I think he said she is 9. She begged him to let her paint his nails. Not only did he let her paint them, he also kept the polish on for 24 hours, because she wanted to see it on him the next day. We laughed with him as he shared the story, as well as the comments he go over the next 24 hours. I also told him that the story also told me a lot about him, and how much he cares about his patients. My esteem for the man, which was already quite high, went up even higher.

As I am finishing up today's entry, I cannot believe that I have no pictures of Dr. Ralph, or of the bmt nurses we see in clinic every week. I will have to remedy that next week! I do have a pictures of a typical infusion day at the clinic. The pictures were back in September, when Simon was still mostly bald, and Beau's hair was still growing back in after he shaved it to raise money for pediatric cancer research, and as a show of solidarity with Simon.

Day Plus 217

Today was a good day. Simon's cough is all but gone. The swelling in his feet was absent today, as was his back pain. We were able to enjoy a day out that did not include the hospital. Lunch and a movie sure are more fun than hours at the clinic!

Yesterday, on the way to the clinic, I heard a song on the radio that really spoke to my mother's heart. Last week-end, 19 year old Derek lost his battle. It has been a sad time around here. In August, 8 year old Shoshanna passed away. Her bone marrow transplant was the week after Simon's. She never made it out of the hospital. The kids around here are battling everyday for their lives. Some days, the sadness is overwhelming. Every time a child loses his life, we are reminded of the frailty of life. It could have been my child. My child could be the one we all mourn next.

Back to the song. "All of Me," by Matt Hammitt

"Afraid to love, something that could break,
Could I move on, if you were torn away?
I'm so close to what I can't control
I can't give you half my heart, and pray it makes you whole

You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing every fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.

I won't let sadness steal you from my arms
I won't let pain keep you from my heart
Trade the fear of all that I could lose, for every moment I share with you

Heaven broke into this moment, it's too wonderful to speak
You're worth all of me, you're worth all of me
So let me recklessly love you, even if I bleed
You're worth all of me, you're worth all of me."

Wow! It would be so easy to give in to the fear and sadness, but, like the father who wrote this beautiful song, I won't let sadness steal Simon from my arms. He is worth all of my love. Could I move on if he were torn away? He is worth every tear I have shed. He is worth facing every fear. Thanks God. I needed to hear that!

Day Plus 216

Today was another day at the clinic. We are there at least once a week at this stage of the game. Simon received his weekly Cidofovir, which means a 4 hour appointment. I was very thankful to be heading to the clinic on this snowy day for two reasons:
1. Going to the clinic means that Simon is not in the hospital.
2. Going to the clinic means that my child has survived his illness and his treatments.
We get tomorrow off, but get to be back at the clinic for his monthly IVig, which usually means about 6 hours in the clinic.

Simon's blood work all looked good. His white count was the lowest it has been in a while, but it was just below normal range, so even that was good. The lower count could be due to the cold he is fighting. His kidneys are doing well. His liver function isn't quite what it should be, but nothing the doctor is concerned about. That is probably related to one of the umpteen million meds he is currently taking.

In addition to the lab work, IV fluids, and IV meds, Simon had the joy of enduring a nasal culture. For that, they squirt saline up his nose, and then stick a really thin tube WAY up and vacuum out some of the snot to send to the lab. They have to do it for both nostrils. It is not a pleasant experience, and I wish I could say it was Simon's first time. Unfortunately, he has to endure this any time he has the slightest sign of a runny nose. Then they have to repeat it until all the cultures come back negative. Poor kid!

Simon is getting stronger, which is great news! He was able to walk all the way from the garage up to the clinic. It was the first time in the last couple of months that he hasn't needed a wheelchair for the trip. When we left, he practically ran across the lobby. (He was trying to catch up to a therapy puppy in training.) It was encouraging to see a glimpse of his former energy.

Beau continues to fight a nasty cold. He headed home with his dad this afternoon. It is just a bit too quiet around here without him. If all goes well over the next couple of day, Simon, Ezri and I will head south on Saturday. Moving home is still a ways off, but it will be nice to be able to spend a few days down there, catching up with friends and enjoying the views.

Allen Browning is the family coordinator here at Brent's Place. Simon was needing some doggy loves, so Allen brought his dogs by. The picture was taken at the end of September, the first time we thought we were going to be able to move home.

Another quiet day for Simon. He gave me a bit of a scare with at temperature above 100 this evening, but it has gone back down. I will be checking it again at bedtime. Tomorrow will be a long day at the clinic, while Simon receives his weekly antiviral, Cidofovir. To start the day, he will need to take 3 Probenicid tablets at 7 a.m., 3 hours before the Cidofovir. The Probenicid is to protect his kidneys from the toxic effects of the Cidofovir. He will also need to take Probenicid 2 and 8 hours following the infusion. At 8:30, we will check into the clinic. Then Simon will receive pre-Cidofovir fluids for an hour, followed by the Cidofovir. Finally, he will receive post-Cidofovir fluids. Like the Probenicid, all of the fluids are needed to protect his kidneys.

Beau is still sick, with a cough and scratchy throat. I am thankful that Bob will be able to come up to Denver to stay with him tomorrow while I take Simon to the clinic. Sick children who are not patients, are not allowed at the clinic. Not that I would want to make him go and sit in the infusion room for hours when he isn't feeling well anyways.

Lastly, I'd like to ask for prayers for one of the precious little ones her at Brent's Place. The following is a post from her dad this morning. Please keep this family in your prayers.

Shawn Hantke

POLINA IS IN INTENSIVE CARE, MONOCLONAL ANTIBODIES THERAPY IS GOING PRETTY ROUGH!!!!!!! SEVERAL TIMES LAST NIGHT SHE HAD BREATHING, HEART RATE, AND BLOOD PRESSURE ISSUES PLUS SEVERE HIVES, WE WERE NOT SURE SHE WOULD MAKE IT THROUGH THE NIGHT.!!!!!!!!! PLEASE HELP US FIGHT, WE NEED EVERY POSSIBLE POSITIVE THOUGHT, HOPE, AND PRAYER SENT OUR WAY A.S.A.P. AND KEEP THEM COMING, THANKS

Kids should not have cancer. Period. End of story.

Day plus 214. 214 days ago, Simon received a life saving bone marrow transplant. I praise God for the advances in medicine that have given us a hope for a cure. I also pray that at the end of this journey, Simon will be able to go on and live a long and happy life.

Simon's temperature has been creeping up today. He is currently at 99.9, which isn't yet a fever, but it is higher than he usually runs, so I'll need to be keeping an eye on it. The swelling in his feet is also getting a bit worse. Please continue to pray for Richard and Diane as they deal with the loss of their son. Also, for the parents of all the kids here at Brent's Place. While we all deal with the sadness over the loss of Derek, we all also deal with the knowledge and fear that it could have been our own child.

I really do not have much to share today. After a long and busy day yesterday, we enjoyed an unashamed day of total laziness today. Simon's cold seems a bit better. He is experiencing swelling again in his feet, so we need to keep an eye on that.

Simon was complaining of ear pain earlier, but it was only due to the volume of my enthusiasm during the final moments of the Broncos' game. We are not normally a football family, but after meeting some of the Broncos in the hospital and here at Brent's Place, we have become fans of the Broncos.

The pictures are of Brady Quinn visiting Simon in the hospital, and some of the Broncos visiting Brent's Place.

A quick trip home allowed us about 5 minutes to unload the car, pet all the pets, and turn around and come back to Denver. We made it back to Denver just as the snow began to fall. Simon is coming down with a cold, complete with cough and runny, stuffy nose. We will be watching that closely, hoping it doesn't land him back in the hospital.

When we arrived back at Brent's Place, we learned the sad news that Derrik, age 19, finally lost his battle. He was diagnosed at age 6, so it was a very long journey for him and his family. My heart breaks for this family.

As parents, we head into bone marrow transplant hoping this will be the cure for our child. We know it will not be an easy road, but when we get through it, our child will be healed. Reality can be brutal.

The reality that not all the kids make it out of the hospital. The reality of a mother having to bury her 8 year old daughter. The reality of a father, who has been fighting for his son's life for 13 years, and loses the battle in the end. The reality of the mother who is taking her 8 year old son home, a year after transplant, to live his finally few weeks at home, instead of in the hospital. The reality that any one of them could have been or still could be, my story.

While all of the bumps in this road called Simon's Journey have been mild, we still have a long ways to go. Although we pray that Simon's transplant is his cure, we also know that Simon may face many more battles in the years to come. The medicines that Simon takes to prevent his new marrow from attacking his body are hard on his kidneys. The antiviral that Simon is getting weekly to fight the adenovirus is toxic to kidneys, and can cause total kidney failure. Simon went into transplant with kidneys only working at 80%, due to his year and a half on immune suppressing drugs.

The chemotherapy that Simon received to prepare his body for transplant puts Simon at increased risk for future cancers. The steroids that Simon has had to take to combat graft versus host disease, have had brutal effects on his body, placing his bones and his joints at risk. All of the meds Simon has been on have given him a bleeding ulcer. Until Simon's t-cells come back, he is at high risk for infection, and a simple cold can land him back in the hospital.

I will continue to pray for the best outcome for my child. I will continue to hang onto hope for his future.

We are at day plus 211 post transplant, but who's counting? Simon had a pretty good day today. His back seems to be doing much better. We are really excited about having a car again next week. The weather has been gorgeous, and it will be nice to get out of the apartment for a bit. Of course, it is supposed to snow tomorrow night, so we may have to make indoor rather than outdoor plans.


Checking out Simon's heart as part of his pre-transplant workup.

Thankful for so many things and especially so many people. Mary Berry, who has a heart for families going through tough times, and knows how to make things happen. Gina and Eric Mantz, for taking the time out of their busy lives to help keep our car running. Falcon Transmissions, who heard our story and rebuilt the transmission in the van, so we will have a car to drive in Denver again, as soon as we can get the car up here. All the amazing friends who have held us up in prayer throughout this incredible journey, both old and new. God never fails.



Simon is still really swollen from the steroids, but his hair is growing back nicely.

I had good intentions with this blog, but just can't seem to keep it up. When I start to write, I tend to get a bit long winded, and I never seem to have the time to write everything I want to express.

I have been trying to keep friends and family updated via facebook. Facebook limits the number of words I can write, so it is easier to keep my updates a bit shorter. (Okay, to be honest, a LOT shorter.) I am going to try something new with this blog.

When I update Simon's status to facebook, I am going to copy it here. If I feel the need to write more and can find the time, I will write more. At least this way, I can keep people without facebook updated. (Can you believe there are actually people who do not have facebook? Not sure I can!)

Today's update: Simon was at clinic today for his weekly Cidofovir, which is an IV antiviral. His counts are all looking good. He has been having a lot of pain in his back, which the doctor is hoping is just muscle spasms rather than damage caused by the steroids. Next week, Simon will have 2 days of infusions. He is getting a bit stronger every day. Thanks for the prayers! God is good all the time!

The picture is Simon, Ezri, and Beau and some of the many visitors who came by during Simon's three week hospital stay in December. There are a lot of really good people in the world who take time from their busy lives to try to make The Children's Hospital a fun place to be, especially during the Christmas season. Note the Christmas lights on Darth Vader!