Dancing in the Rain.

A friend posted this on her facebook page this morning, and I just had to use it. We have spent the past 8 and a half months waiting for this "storm" of Simon's transplant and recovery to pass. It seems as though we get through one crisis, only to be hit with another.

Last week, Simon had his last dose of steroids. The general consensus was that off the steroids, Simon would start to feel better. His strength would return. The swelling all over his body would gradually go away. His blood pressure would return to normal. He would start to feel good again. We would be able to start thinking about moving back home, only 8 month after his transplant.

Two days after being off the steroids, he developed a low grade fever, bladder issues, and felt generally miserable. Three days after steroids, we were back in the clinic. Simon was put on lasix for the swelling in his feet and told to up his intake of fluids. We were home through the week-end, and back in the clinic on Monday. No improvement. The nurse practioner looked at Simon. "Simon, you look miserable. Go home and don't call unless you have a 'real' fever." As opposed to a fake fever? Does she think I am holding his thermometer over a heat lamp to get a high reading?

Wednesday, we were back at the clinic for a scheduled visit and his monthly IVig, which is a 4 hour infusion. Thankfully, his regular doctor also checked Simon out. Dr. Quinones is awesome with Simon, and NEVER discounts any of my concerns. (Amazing how quickly the doctors and nurses earn a warm place in this mother's heart, simply by listening to me. Just as quickly, those who don't listen, or brush off my concerns end up on my 'don't like' list.)

Dr. Q thought that Simon, being so sensitive to the steroids, was having trouble producing cortisol, the stress hormone. He put Simon on oral hydrocortisone, and expected him to immediately begin feeling better. The next morning, Simon did seem to perk up a bit. It lasted about 30 minutes before he was back in bed, feeling cruddy.

That brings us to today, Friday. I called the clinic about a prior authorization that was needed for one of Simon's meds. Julie, one of my favorite people in the entire world, looked up Simon's file, when I told her he was still miserable and asked how long it would take for the hydrocortisone to make a difference. The results for Simon's bk virus finally came back, and his levels are through the roof. She said it is no wonder he is feeling so lousy.

After 2 weeks off of Cidofovir, Simon needs to be back on it, and it needs to happen on Monday. Cidofovir is the IV antiviral that is toxic to the kidneys. Simon needs to take 3 pill, 3 hours before he gets his Cidofovir, just to help his body flush out uric acid. Then he gets to take 1 of those pills 2 hours after the med, and another one 6 hours post med. He also gets a huge bolus of fluids an hour before the IV med, and another one after the med. Did I mention that this antiviral is toxic to the kidneys?

This week, I have had several people ask me what I do to take care of myself. Taking care of Simon has been a 24 and 7 type of a job for the last 8 months. I love my son and wouldn't have it any other way. That being said, I really do need to learn to dance in the rain.

When we were home 3 weeks ago, I rented a viola. (Sorry Brent's Place neighbors.) I had played, off and on, for 2 years, before we learned that Simon had to have a transplant. It was one of the first things to go as we prepared for this journey. I play for me. It helps me relieve stress and makes me feel good.

This journey has taught me how important it is to live life to its fullest. No more reading about things I want to do, and dreaming about things I want to learn. I have to look for ways to get out and do things. In December, Ezri, Beau and I had our first English riding lesson. Life kind of got in the way for the next two months, but today, we had lesson number 2. We were dancing in the rain, through the storm. (Technically, we were riding, not dancing. Also, it wasn't raining, but you understand what I mean.)

I will "Look back and thank God. Look forward and trust God. Look around and serve God. Look within and find God." (In an email from a friend.) I can look back on all we have been through, and thank God for being my strength when I am not strong enough. I can look forward and trust God to continue to heal Simon and to provide psychically, emotionally, and financially. I can look around at all the examples of service God has placed in our lives, and learn from those wonderful people of ways to help others. I can look within, through my viola, through riding lessons, through those brief moments of calm, and find God. I can learn to dance in the rain!

Summary of a Long Day.

It has been a long day, and I am beat. The day started with a Hawaiian themed breakfast downstairs. Lots of yummy food and great company. After breakfast, the kids got some school work done while I washed the bedding and cleaned the apartment.

Simon has been feeling pretty crummy for a few days now, and his feet are still swollen. He also started complaining of bladder issues. Great urgency, but not being able to go much. All of these add up to a call to the clinic. Simon needs to be seen and checked for a urinary tract infection.

With about a foot of snow on the ground, the nurse suggested taking the shuttle. 2 hours at the clinic. His red count and platelets have dropped, but are still okay. His temperature was up to 100.2, .3 degrees below needing a blood culture, and only . 8 degrees below earning a stay in the hospital. His creatinine level is going up, indicating his kidneys are stressed. Lasix for the swelling. Push the fluids, and back to the clinic on Monday. Sooner if he spikes a fever or isn't able to urinate. (His fever is currently back where it needs to be.)

We made it back to Brent's Place just in time to celebrate Anya's 6th birthday. Anya's brother had a bone marrow transplant, and was just released from the hospital earlier this week. To celebrate Anya's birthday, her mother and aunt prepared a wonderful Indian meal for the entire building. (I am still stuffed!) The community times here at Brent's lift my spirits.

As I said, it has been a long day. Most of it good. A bit, not so good. The snow continues to fall, and I am beat.

Blizzards and Other Thoughts.

Simon has had a rough day. His appetite is gone. His feet are swollen. His head is hurting, and he has been flirting with a fever, off and on, all day. If he isn't feeling better tomorrow, I will be calling the clinic. Everything looked great when we were there yesterday, but things can change so fast.

There has always been a concern about Simon's kidney function. He went into transplant with his kidneys only functioning at 80%, and several of the medications he is on can be toxic to the kidneys. He is also on medicine for high blood pressure. Both the high blood pressure and the medication can cause swelling.

We had planned to head home for the week-end, but predictions of snow put that on hold. The snow started falling about an hour ago here in Denver, but they are having blizzard conditions at home. The news reported that this could be one of the top ten snow falls in Denver in the last century. I am glad I decided not to travel.

If Simon were to need to be admitted to the hospital, I am not sure what I would do. Ezri and Beau are up here with us, and they are not allowed in the hospital inpatient areas, due to flu season restrictions. In the past, their dad has come up and taken them home. If this storm dumps as much snow as they are predicting, it could be days or even weeks before he could get up here. (Last February, we were unable to get the car out of the driveway for 11 days after one snow storm.) The pictures are of the kids hiking up to the house after the snow fall last February.

I'll be listening to this song as I fall asleep tonight.

I CAST ALL MY CARES UPON YOU
I LAY ALL OF MY BURDENS,
DOWN AT YOUR FEET
ANYTIME, I DON'T KNOW
JUST WHAT TO DO,
I JUST CAST ALL MY CARES
UPON YOU

Counts were good today. Simon is now officially off steroids. Next week, we will find out how well his counts are able to hold without the steroids, and if the graft versus host will flair again without the steroids. He has been on the steroids this round since mid October, so this is a huge test. If he passes, we are one step closer to being able to move home!

Now that he is off the steroids, his blood pressure should return to normal. We are also hoping to be able to end the Carafate, which he was put on back in November when he developed a bleeding ulcer. That one isn't a tough med, but it is a booger to get his 3 doses in every day. It has to be timed just right with his other meds, either an hour before or two hours after.

We are beginning to see the light at the end of the tunnel, and for once, it is not the light of an oncoming train!

Simon on steroids. In another couple of months, I will be able to post pictures of Simon without the swollen moon face of steroids. He will always have the stretch marks as a reminder of what the steroids did to him. (While the effects of the steroids are nasty, they also were necessary to keep him alive.)

"The task ahead of you is never a great as the power behind you." This quote is on a shirt of Simon's. It has a picture of a soldier kneeling. Under the soldier is the verse " Be strong in the Lord, and in his mighty power." Ephesians 6:10. It seemed appropriate.

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?