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.