Tying My Hands.

Last week, I finally received the results from Simon's latest bone marrow. Given Simon's counts, I fully expected the bone marrow to also be up. (The previous marrow had been at 30%). At the clinic, they have all been astounded by Simon's progress. Dr. Cook was expecting Simon's marrow to show continued improvement and was even talking about weaning him off his medication.

Then the doctor called. 15-20%. Not what any of us were expecting. I am trying desperately to take my cue from the good doctor and hold onto hope. God says He will never "leave thee, nor forsake thee." It is Dr. Cooks hope that the lower cellularity of the marrow is due to a sampling error, rather than actual further failure of the marrow. Rather than wait 3 months, they will do a bone marrow biopsy in September. Next time, the will take a sample from both hips. Which ever side has the highest cellularity will give a more accurate picture of the state of Simon's marrow.

Simon will be visiting the doctor at 11 this morning. While I am trying not to worry, I am also preparing myself for the worst. If his counts are falling, it will indicate the likelihood of failure. If Simon's marrow is failing again, it will require transplant.

None of Simon's siblings are bone marrow matches, which means Simon would have to find a match through the general registry. Transplants from an unrelated donor are more risky than from a relative. Bone marrow transplants are also more risky than other organ transplants. To start with, Simon would have to endure intense chemotherapy to totally wipe out his immune system. From the beginning of the process to the end, would require 3 months of living in Denver, either in the hospital or in special housing. He would not be able to leave Denver at all.

I start my new job next week. I have been hired as a kindergarten teacher at the school the kids attend. It is a dream job, and while I am a bit nervous, I am mostly excited. I feel like everything has just fallen into place for this job to happen for me. I call it a God thing. Not only will I be doing something I love and working with the best staff in the universe, but I will also be able to accelerate our debt elimination, build up our savings, and have some extra to be able to do some fun stuff with the kids.

While I know in my heart that God is in control, and that He knows the future, I am really struggling. I am trying to find solutions to problems before they occur. How can I be a full time mom to 4 kids in Elbert and a mom at a very sick child in Denver? How can I manage all of that while working full time? Neither of my cars are dependable enough to be driving back and forth to Denver everyday, not to mention the cost of gas to do so.

Bob is speaking to the powers that be at work about being able to work form home, should Simon have to go to Denver. He had been home for the last 6 months, but went back on the road 2 weeks ago. This one was supposed to be for 5 weeks, but it is looking like it may be much longer.

I am worrying and fretting about reliable, inexpensive transportation for the commute to Denver, when it isn't yet a certainty. I am worrying and fretting about juggling the demands of family and career and a sick child as a single mom. I am worrying about being up to the task that God has set before me.

The other day, I made a list of things that I am worrying about. Things that I have no earthly control over, or just seem unable to find solutions for. Topping the list, of course, is Simon's bone marrow. Many of the other items on the list are tied to the details should he go to transplant. (Reliable, good gas mileage car, is right up there.) These are the worries I need to hand over to God. These are the worries I hand over to him on a daily basis. Trouble is, I keep taking them back! The day I wrote these things down, I also decided that I was going to tie my hands behind my back to prevent me from taking them back. They are worries I do not want or need. I have given them to God, and I will keep re-tying my hands, until I am no longer able to escape the knots.

And I give thanks for a God wo is so much bigger than all my insurmountable worries.

Summer's End

I have been neglecting my blog. Shame on me. What began as a means of keeping others updated on Simon's struggle with aplastic anemia became so much more. . This blog has provided me with a means for venting my frustrations, joys, and sorrows. By pulling the jumbled thoughts out of my head, I am able to give them some sort of organization. I am able to come to grips with my own struggles and better see how God is working in my life. It has enabled me to strengthen my faith and serves as a reminder of how far we have traveled on this road over the last 6 month. I regret my neglect.

Following spring break, life, for all intents and purposes, returned to normal. Simon was back in school. Visits to the doctor have dwindled to only once a month. (Simon misses the weekly visits, and while I do miss the wonderful staff and doctors, I do not miss trips and the reasons behind the trips!) I worked almost every day during the last month of school. My days in the classroom convinced me that teaching was something I wanted to pursue.

I registered for the Praxis, which is a standardized test that is required to get a teaching license in Colorado. I studied for the test and began researching my options for obtaining my license. I have a B.S. in elementary education, but did not student teach, so additional schooling of some kind is required. The full-time job of mothering a sick child was replaced with the full-time job of trying to figure out my life!

June was a month of blessing amidst the whirlwind of activity. The church volunteered to finish the 2 bedrooms we had planned for the basement, so mom would not spend another winter in an unfinished basement. (And just in case you are wondering, living in the basement was her choice. She was not banished! She prefers to have a place to get away from the nonstop activity and noise that are unavoidable in a family with 5 children, even if it means living in a dimly lit, poorly heated area of the house.) When my brain was overflowing from cramming for the test, I would take a break and work on the years worth of clutter that was crammed into the basement. Throw in swimming lessons, the nonstop chore of trying to keep 5 kids on summer break quiet while dad is working from home, and very drizzly, damp, and cold June, and you have an inkling of what that month was like! I credit my survival with the fact that Annette, my older sister, was able to come out for a week and help mom with her part of the clutter. There is no way I could have managed without her help.

Simon's June visit to the doctor was encouraging. His platelets were holding in the normal range, as were his granulocytes. His total white count was just out of the normal range, as was his red counts. For Simon, these results were huge. The staff at the clinic were thrilled. On July 7, Simon had another bone marrow test. On that day, his hemoglobin was in the normal range for the first time since this all began. Even following transfusions, his counts were never this high! Dr. Cook was talking about waiting 3 months for the next bone marrow test, and beginning to take Simon off of the immune suppressing drugs! In all the years, the clinic had never had a patient respond so well to the ATG treatments. They were all holding Simon up as a miracle.

The quiet of the house has rapidly vanished. It has been replaced by a whiney bi-polar 11 year old and an over-energized 17 year old. Not a good combination! The blogging will have to be put on hold.

Blood Drive

I am sitting in the school gym, watching the last few members of the community donate life giving blood. What an amazing and powerful show of support for Simon and our family.

Bob has taken the kids home and I am waiting to help with the clean up. Before Simon went home, he watched the flow of people into the gym. He was very moved. To think that so many people care enough about him to make that gift. The teachers and parents who have never given blood, but because of Simon, they stepped up!

Simon's teacher from 4th grade gave blood for the first time. When we passed out aplastic anemia awareness ribbons to the school, she was talking to her class about the fact that she was going to be donating blood for the first time. She was a bit apprehensive, but was more than willing to do it for Simon. (One of her students made a comment about "If you survive the blood drive. . .) She still donated!

The special friend who is terrified of needles and all things medical. She is the one who organized the blood drive. I held her hand while she gladly made the sacrifice for Simon. (I thought she was going to break my hand, but she did it.) She put a side her own fears and made the sacrifice. When it was over, she said she would be willing to do it again.

I started this post a life time ago. Or at least it seems that way! The blood drive was after spring break, and now summer has come and almost gone. The kids will be back to school in less than 2 weeks!

I am so grateful to so many who gave so much. Giving blood is giving life and hope to someone in need. While Simon has only had 3 transfusions in the 6 months that we have been dealing with aplastic anemia, many suffers need transfusions weekly. Words fail to express the gratitude I feel.

It's Been a LONG Week!

It is Saturday night, and I am just waiting for the kids to go to bed, so I can head there myself! I am watching the freezing fog roll past the windows and trying to remember that it is April and tomorrow is Easter.

All in all, it was a good week. With Simon back to school, I was able to work again. When I can, I am a substitute teacher at the kids' school. It is a job I absolutely love! I have all the fun of teaching, without the chore of lesson planning. The kids at the school are great. When I am there, I feel like I have found my calling in life. I feel as though I am home!

In the 2 months before spring break, I was unable to work more than a few days. As much as I love the work, this week wore me out! I would come home and just want to collapse. (I actually did that one night! I told Bob the kids were his to feed and get to bed, because I was going straight to bed!) Being a mom, that is RARELY an option. I would get home and have to face dishes and laundry and try to figure out what to feed the kids.

On Wednesday, I took Oliver and Ezri to the doctor before going to work in the cafeteria. Ezri had a slight fever and a sore throat, and Oliver was still running a fever as well as having an ear ache and pain in his chest. Luckily, they did not have strep, but Oliver did have a severe ear infection as well as walking pneumonia. Doctor put them both on antibiotics. Ezri was back in school the next day, but Oliver was out all week. Today was the first day he actually started to feel human again!

Simon made it through the first 3 days of the week. By Thursday, he was exhausted. His throat was beginning to hurt, so he stayed home. On Friday, he was still drained and his throat was worse, so I kept him home. I called the doctor on my break, and they said to bring him in. I was afraid that his counts had begun to drop again.

When the doctor looked at his counts, he wanted to throw a party! Definitely a cause for celebration! Simon's platelets are reaching closer to the middle of normal range. His hemoglobin is just below normal, and his granulcytes are slowly creeping up! It looks as though Simon is on the mend!

Simon will go back for another check in 2 weeks, and another bone marrow test in another month. If the bone marrow is improving, we will start to look at weaning him off of the immune suppression medication he takes twice a day.

We still do not know if any of the other kids are bone marrow matches. The office got the results of the tests back, but there was a problem. Simon's test results came back in the normal format, but the results on ALL of the other kids was gibberish! Dr. Cook had to send them back, so they could be readable.

Tomorrow is Easter. The holiest day of the year. The day Christ rose from the grave after being crucified to pay for MY sins. Tomorrow will be a day of celebration. As we celebrate Easter, we will also celebrate the new chance at life Simon has been given.

On Wednesday, the community will come to the school for a blood drive, a show of support for Simon. How blessed we are to have so very many people who care about Simon and our family.

While I am breathing easier after seeing Simon's counts on Friday, I am also aware of the fact that they could start to drop again just as rapidly. I am taking every day as gift from God. I am cherishing my children and giving thanks. We will continue to pray for healing and continue to pray for strength, no matter what tomorrow may hold.

Back in the Saddle

Okay, so maybe not actually the saddle, but we are getting back to normal, with all its up and downs.



Yesterday marked the end of spring break. It also marked the end of Simon's exile from any kind of life outside of home and doctor's offices. I will admit, I was terrified of his transition back into school life, after being the center of attention for the last two and a half months, and being able to do a whole lot of nothing. Simon himself wasn't too sure about going back.



The day got off to a rocky start, and my fear grew. Simon had a melt down and Beau was full of tears. (Beau couldn't wait to get back to school, but was having trouble with the early morning and having to move faster than a snail!) I can't remember what set Simon off, but I did not take it as a good omen for the day. Oliver had a fever and a sore throat. I prepared myself for a rough day!



By the time we reached the school, Beau and Simon were both happy. I hung around the school, waiting for Simon to appear in the office. By the time lunch arrived, I still hadn't seen Simon. What a relief! I worked in the cafeteria and on the playground, so I saw Simon at lunch and was thrilled to hear he was having a great day. Kids who had really gotten on his nerves before he got sick were being nice to him. He was feeling great, both physically and mentally. The rest of the day continued in the same fashion. His teacher was also very pleased with how well he was handling being back.



At one point during the day, I spoke with a co-worker about how well the day was going. We talked about the fact that it was like a honeymoon period. While I was pleased, I also wondered how long it would last.



Today, both Oliver and Ezri are sick. Sore throats, achy, fevers. The crud has hit our house, but I am thankful that it waited until Simon's counts were up! Bob is working from home, so I am able to be up at the school. Today I subbed in a 1st grade classroom for the morning hours.



As I was working with a reading group, Simon's teacher came in. My first thought was, honeymoon is over. The first word's out of Mrs. H's mouth were, "Honeymoon's over." (Great minds think alike!) Simon had an issue with his math homework. More precisely, he hadn't done it. It meant missing recess. Often with Simon, once one thing upsets the balance in his life, he falls apart. He fell apart over the math, but once he got through that, he was able to turn his day around. He even went to PE, which is not his favorite subject, and he was given the choice to sit it out. That was all I heard from or about Simon, until the end of the day.



Beau and I took a load of our things out to the car, while we were waiting for Simon to be done with class and for orchestra to begin. We were heading back into the building when Simon came out of the building sobbing. It broke my heart. I held him and inquired about what the problem was.


One of the kids in his class had said some very hurtful things to Simon. He was broken hearted. We talked through the falseness of what was said as we returned to the building and looked for his teacher. It was the end of the day and Simon was so upset that he left the classroom as the class was preparing to leave. He left without a word to his teacher or anyone. Mrs. H promptly dealt with the issue, and Simon was reassured, but still feeling a bit bruised in his heart.

He remained sad through orchestra. When we picked up Warren, Simon told Warren all about it. Warren wanted to go to the school and defend Simon's honor! Of course I stopped that idea, but I was also proud of Warren for wanting to stick up for Simon. Warren doesn't see much of a need for other people, and usually sees Simon as more of a nuisance than anything. As their mother, I love to see those rare instances that prove they really do love each other!

I started this post on Tuesday, but was just too tired to finish it. Falling asleep at the computer suggested that I should call it a night and I did!

After the Snow

One of my favorite things about Colorado is the way we have four seasons. I grew up in the northwest where the seasons all kind of blended together. In Portland and Seattle, we had the drizzly season, the cold rainy season, the rainiest season, and the hot rainy season.

In Colorado, it is different. During the summer, the days can get fairly warm, but there is always relief in the afternoon. Just when it is starting to feel a bit too warm for comfort, the winds come in and cool the air. Our first summer here, we had a thunderstorm almost every day. The heat of the day would disperse as the thunder clouds would build up. The storms could be pretty intense, but they were short lived. They moved in and right back out again, leaving the earth smelling clean and fresh. Colorado has been in drought, so we have had fewer showers the last few summers, but the thunderstorms have still been a part of summer.

At the beginning of summer, everything is green. The fields and meadows are covered with green grass and wild flowers. As summer progresses, the fields lose their color, changing from vibrant green to yellow to brown.

As autumn moves in, everything goes dormant. The world is brown, except for the evergreens. I love to drive up into the mountains during the fall to watch the colors creep down the hillsides. While we do not have the brilliant reds of the fall maple trees around here, we have mountains full of aspen forests.

Aspen trees have a beautiful white bark and leaves that sing in the wind. In the fall, we drive up to Wilkerson pass and watch the progression of the season down the mountain. The color change starts at the tops of the hills. Aspen leaves turn golden before dropping to the ground. Early in the fall, the tops of the hills have a few golden trees interspersed with the evergreens. As the season progresses, the gold moves down the mountain, until it reaches the roadside.

Sometime during the fall, we receive our first snow fall. It can be a light dusting or a heavy blizzard. Through out the fall and winter, the world alternates between white and brown. Gray clouds come in with the snow, but rarely last for more than a day. Sunshine is the norm, rather than the exception. Days can be cold, and nights even colder, but the sunshine takes the edge off.

Following winter, we have the spring. March is actually our heaviest snow fall month. We get a phenomenon known as thunder snow. The loud claps of thunder in the midst of a snow storm. It is quite impressive!

Before the spring snows, the world is brown, void of signs of life. And then the snow comes. We have had a blizzard every other day for the last 2 weeks. None of the systems have dropped large amounts of snow, but the winds have caused white out conditions. The snow comes in and covers the brown, and when it leaves, the world suddenly springs to life. It is as if the snow has washed the earth.

In place of the brown that covered the ground before the snow, the surface is covered in green. This is our fifth spring in Colorado, and I am still amazed at how rapidly the change in color takes place. It literally appears to happen over night! The ground is green and the shrubs are full of buds.

As I type this, I am reminded of how Jesus washes away our sins. We are covered in filth, all brown and dirty. The sacrifice of Jesus on the cross has given us the ability to be washed whiter than snow. As the snow washes away the brown, Jesus washes away darkness in out hearts.

This year, more than any time in my past, I am appreciating the newness of spring. As spring brings the world back to life, so Simon's rebounding blood counts are bringing him back to life. The bone weary exhaustion he was experiencing has been replaced with abounding energy. The fear of illness or infection because of his low white counts has been replaced with a zest for life.

The snows of spring have washed the brown from the earth and Jesus has given me back my bouncy, nonstop Simon, washing the fear from my heart.

And I give thanks.

Getting Back to Normal

Today was a good day. Make that a great day! The sun was shinning. (We are between blizzards.) Simon is healthy, and we were able to leave the house! It amazes me that my spirits can be so lifted by just getting out and doing something besides visiting doctors!

I feel like is getting back to normal. What an incredible feeling!

Because of the snow storm that blew through last night, Warren had a 2 hour school delay. On Thursday, he only has one class, which is second period. Rather than have Bob take him into Falcon for the bus at 8:30, I just took him to school. He didn't need to be there until 10:55, and I was going into town anyways.

First stop was the bookmobile. From there, we drove across town to Warren's school. Next stop was Focus on the Family. For those of you who have not had the privilege of visiting, it is a phenomenal place to take the kids. They have a 3 story slide that the kids think is the greatest. (I love the fact that they have to climb up 3 flights of stairs to go down it!) There are climbing toys, secret passage ways, a life size airplane, a puppet theatre, dress up clothes and a stage for performing on. We met up with friends, and I was able to visit with a dear friend while the kids ran around and had a ball! (Only Simon, Ezri, and Beau were with me. Oliver is in California for a youth conference. He spent today at Magic Mountain.)

We all started to get hungry, so we picked up Warren and headed to McDonald's for lunch. The kids were able to have happy meals, Warren had his favorite chocolate shake, and I just enjoyed being out with the kids. (I had a burger and fries too.)

After the meal, every one was in good spirits, and I didn't want the day to end, so we went to a movie. "Inkheart" was playing at the cheap theatre, and I love going to movies with my kids. Beau wasn't thrilled about going, but as I couldn't leave him in the car by himself, he grudgingly came along. We got our popcorn and sodas and thoroughly enjoyed the show. Even Beau decided it wasn't so boring after all!

When the movie was over, we headed home. After dinner, Grandma opened her birthday presents and we had Italian Cream Cake. A near perfect ending to a near perfect day!

Now perfect days in this family are any thing but normal! But it was a day free of doctors, a day not dominated by Simon's illness, and a day to be joyful.

Once we got home, Simon started bouncing off the walls. He was very hyper and in every one's face. Now that is normal and I give thanks! The kids are all now in bed and it has been a good, but long day, so I am calling it a night.

Tomorrow will be another good day, but of a very different kind. I am taking a mom's day out. I'll start start at Starbucks, having coffee with a friend I haven't spoken to at all over the break. Next, I am getting my hair trimmed, which always lifts my spirits. Next, it will be off to tea at the Glen Eyrie Castle with some dear friends. After that, 2 of those friends and I are going to visit a knitting shop that I have not yet been to. I am looking forward to tomorrow with great anticipation. My kind of perfect day!

And I give thanks!

Releasing the Pause Button

My kids are growing up in a world of technology. We have always had a VCR and more recently, a DVD player. They play handheld electronic games and computer games. Just recently, the kids got a Wii. One of the side effects of all this technology has been vocabulary the children use.

When the kids are in the middle of a game of make believe, and they are interrupted for dinner, or to take care of their dogs, or any other reason, they say to one another, "Pause the game." This terminology has always cracked me up. It is surely a sign of the times.

How often in life, do we wish we could just hit the pause button for a time. It would be nice to be able to pause life for a time to catch up on sleep or the unending chores that need doing. I have often wished for a mute button when the kids are getting loud or arguing with one another!

For the last 2 months, there has been a pause button on our lives. When we received Simon's diagnosis of severe aplastic anemia, someone hit the pause button and our lives were put on hold. Plans for the future stopped.

We had been planning a trip to Portland and Seattle to visit friends and family. While Bob has been out there a lot over the past 2 years with his job, it has been 4 years since our last visit. I had been looking forward to the road trip and to seeing friends I hadn't seen in years. Then the pause button was hit. With Simon's illness, travel was out of the question.

Yesterday, Simon was back at the doctor for his routine check. It had been a whole week since we had been. Simon has been active following his transfusion of 2 weeks ago. He even went out sledding a bit when we got the snow last week. He has a few new bruises on his arms, but nothing severe. I was anxious to find out what his counts were.

When the nurse brought in the count sheet, I was blown away by the platelet count! It has been climbing steadily, but over the past week is flew! Last Monday, it was up in the 80's. Yesterday, it was at 164! Normal range starts at 140! No longer do we have to worry about something as mundane as a nosebleed or a simple fall, or Simon bumping his arms or legs. As far as bleeding goes, Simon is a normal kid again, able to participate in everyday activities.

Simon's red count, especially the hemoglobin, is exactly where it was last week. While still below normal, it is high enough that Simon is not easily tired. He can go sledding or take a walk or ride his bike, just like any other kid!

Simon's white count is a bit lower than it was a week ago. It has gone from 1.8 down to 1.1. Low, but much higher that it was when he needed Neupegen to bring it up. It is high enough that Simon can go shopping. He can go to a movie or the mall, or a crowded restaurant. He will be going back to school after spring break!

Dr. Cook is thrilled with Simon's progress. It appears that Simon is responding well to the immune suppression therapy he received early in February. For now, we made be able to avoid the bone marrow transplant!

Simon's bone marrow is still at 5%, but Dr. Cook had warned us about that. He said often the peripheral counts come up before the bone marrow actually starts to rebound. We will do another bone marrow biopsy and aspiration in 2 months.

We are still waiting to hear if any of Simon's siblings are matches, but with transplant on the back burner, that doesn't seem so critical at this time.

Simon still has some PNH cells, which are malformed red blood cells. That is very common in aplastic anemia, not necessarily indicating that Simon has PNH. However, about 1/3 of people with aplastic anemia also have PNH. For now, Simon's PNH cells are low, so the doctor will continue to watch that. If actual PNH develops, Simon will need the transplant.

We are also still waiting for the results of the chromosomal fragility test. I still have no idea what that means, but am not going to worry about it.

Over the past 2 months, we have visited the clinic anywhere from 2-5 times a week. Throw in the occasional trips to the hospital, and Simon's illness became a full time job. Our next visit is scheduled for 2 weeks out! Down to twice a month! I am loving it!

The pause button has been released! We are once again able to play! While I will not make any plans that cannot be easily changed, I am once again contemplating a summer road trip. With Bob working from home until July, the kids and I should be able to take a couple of weeks to head to the west coast in June. We might even be able to squeeze in a camping trip or two. Life is moving forward! God is good and I give thanks!

On another note, this morning at 5:30, I dropped Oliver off at the church. He is heading to a youth conference at West Coast Baptist College in Lancaster, CA. I am thrilled for him to have this opportunity. He has always been my rock, stepping up to help when needed. Over these past 2 months, he has taken on more than his share of responsibility around here, even without being asked. He has earned this break. His trip will include a day at Magic Mountain Amusement Park. I am missing him already!

I do not know what tomorrow holds for Simon or the rest of our family. I do know that today, he is healthy and we are going to rejoice in the day and HAVE FUN! We are hitting the play button!

Monday Praise Report

Today was a good day at the doctor's office. Simon's platelet count continues to rise. His granulcyte level is high enough that he does not need to be isolated. His hemoglobin is about the same place it was the day after his transfusion last week. If his counts remain this high, he will be able to return to school full time after spring break!

Dr. Cook was very pleased with today's counts and with how well Simon is doing. He is encouraged by Simon's progress and is even hopeful that the immune suppression treatments are working. Perhaps Simon will be one of the lucky ones who is able to avoid transplant. It is far more than we had been hoping for.

Today also happens to be Simon's 11th birthday. Yesterday, as I thought about ways to make his birthday extra special, I also wondered how many more birthdays he may celebrate. Today, I rejoiced in the news from the doctor and began to look forward to more birthdays in the future. To celebrate the the good news, Simon and I went out for sushi for lunch. Sushi is one of Simon's favorites, but he has been unable to eat it since his diagnosis. Following today's counts, the doctor said Simon could do just about anything he wanted!

While the news today was good, I am also holding back on my enthusiasm. We are still waiting on some test results. The PNH test is still out. If it comes back positive, transplant will be necessary. The first time they did the test, it was inconclusive. While the number of PNH cells that showed up wouldn't have raised any questions in a normal person, in a person with aplastic anemia, they become suspicious.

We are also waiting for a test on for chromosomal fragility. I have no idea what it is or what it would mean. I can only digest so much information at a time, so I will deal with that only on an as needed basis.

Simon's bone marrow report from last Monday still hasn't come back. Dr. Cook warned me that it may come back and show little or no change. He told me not to be discouraged if that is the case. Often the peripheral blood counts rebound faster than the actual bone marrow.

So, we still wait. However, this time the waiting is different. The kids are on spring break, and we now have the green light to enjoy it! If we want to go to a movie or the park, we can all go. We are hoping to spend an afternoon at Focus on the Family, something that had been out of the question before today's cbc.

And now, my family is going to string me up if I don't get off the computer and sing "Happy Birthday" to Simon. Simon picked out a black forest cake, and my mouth is starting to water! This is one birthday celebration I am throwing my whole heart into!

I Surrender All, or Do I Really?

I have been putting of writing this particular blog for a week now. I suppose the time has come to end the procrastination. The reason for the delay lies in the dread that comes with even thinking about these particular thoughts and issues. Even now, as I sit down at the computer, I find myself easily distracted, trying to avoid what must be dealt with.

At church last Sunday, we had a special guest who sang a song about our legacy. It got me to thinking about what kind of legacy will I leave behind. How will I be remembered? What kind of impact will I leave on this earth. From there, my mind wandered to Simon.

Regardless of how long or short his precious life may be, what kind of legacy will he leave behind? Life with Simon can be trying at times. He is bipolar. To him, there is only black and white. There are no shades of gray. For those of us who are willing to take the time to get beyond the uniqueness of Simon, we are able to discover a heart of gold.

While Simon is easily angered and has difficulties in dealing with his emotions, he also has a passion for people. He comes across as a loner, because he doesn't know how to cope with people a lot of the time. For him, it is often easier to play by himself or get lost in a book than to try to understand the intricacies of the emotions of others.

Simon has learned to build a wall of separation around himself. If he pushes others away before they reject him, he spares himself the hurt. Beyond the wall is a heart that loves deeply, and a passion that burns for justice. He is saddened by people who do not know Jesus.

The singer next sang a song that turned my thoughts to surrender. "The secret of life is letting go. The secret of love is letting it show. The power of prayer is in a humble cry. Take my heart, take my soul, I surrender everything to your control."

How does a parent let go of their child's life? When I accepted Christ as my personal Lord and Savior, I committed to surrendering all to God. As a parent, I would give my life for any one of my children. Surrendering my life is easy, but my children? Will I ever be able to say to God, "I surrender Simon to you. He is yours to take, if that be your will." Will I ever be able to surrender my children completely? If I am unable to surrender ALL, how committed am I to God?

If Simon's time on earth is cut short, I do not fear for what comes next. Simon accepted Jesus at a young age. He showed his committed through the act of baptism last summer. God has prepared many mansion for us in heaven.

My fear is for me and the rest of my family. How will we cope if one of us is taken from us? How will I cope if that part of me is ripped away? Even as I type this, the tears are streaming down my face. I want to run as fast and as far away as I can. I am unable to face the possible future.

Pastor Dave spoke of nurses of terminally ill children. The nurses speak of how the children prepare their parents for their death. The children do not die until they believe their parents are ready to let go. My heart is screaming from the pain. "Never will I be able to let go!"

Before my children were even born, I knew they belonged to God. He has placed them in my care with very specific instructions about training them up in the ways of the Lord. It is my responsibility to care for them physically, emotionally, and spiritually. In return, I have the privilege to love on them, watch them grow, and delight in their company. (That isn't to say that they are always delightful to be around!)

Until Simon became sick, the fact that they are only on loan to me has never bothered me. In fact, it has been a source of comfort. With Simon's illness, I am finding myself questioning my commitment to God's ownership of my children. I am able to speak the words, but will I be able to back them up with my actions if asked to do so?

If God requires me to let go of Simon, will I be able to do that? Will I be able to say to God, with all honesty in my heart, "Simon is yours. Your will, not mine be done." If I am unable or unwilling to do that, can I really claim to have faith in God? How can I claim to trust God completely, if I am unwilling to surrender my children to his will?

Abraham was willing to sacrifice his son Isaac on the altar, because he trusted God wholly and completely. Will I ever come close to that kind of strength, that kind of faith?

When we have an intimate relationship with God, we have to adjust our lives to God, not the other way around.

God sacrificed his son, Jesus Christ, on the cross in the most horrific kind of death imaginable, that we might have eternal life. He made that sacrifice for me and He made that sacrifice for Simon. I have to hold tightly to that fact while I grapple with the future.

I have to find peace in knowing that God can see the future and I can't. I have to find strength in the knowledge that God has never let me down. Regardless of what tomorrow brings, I have to rest in God's arms of love. His compassion fails not. He gives me "strength for today and a bright hope for tomorrow."

As difficult as it may be, I have no choice but to surrender all.

Good, But Tiring Days

First an update.



Yesterday, Simon and I arrived at the hospital at 9:00 for his transfusion. I thought we would be there for an hour or two. I should have known better!



They put him into a bed on the pediatric ward so that they could monitor him as he received the blood. We were actually in the ICU side, because the regular floor was full.



Simon thought it was great fun. He was hungry, as always. As soon as they got him settled, he was able to order as much food as he wanted. He started out with an omelet with cheese, bacon, and mushrooms. With that, he had 2 strips of bacon, some sausage, and hot cocoa. After he finished that, he ordered a sausage, mushroom, and pepperoni pizza with macaroni and cheese, canned pears, and grape juice. Finally, he ordered apple cobbler, more canned pears, and a soda! It made my stomach hurt just watching him eat all that food!



While Simon was eating all that food, they pumped 2 bags of blood into his body. It was uneventful, but it took all day. Simon was finally discharged at 3:30. Simon was a bit sad to leave the room service menu behind, but I was more than ready to be done with the hospital! It was a long day and I was very tired! (I did use the time to get my 5 days worth of Bible study done that I hadn't gotten to earlier in the week!)



Simon complained a bit about his legs getting sore from sitting so long with out moving. He got up and walked around the room a bit, which seemed to help. After we left the hospital, Simon started to cry because his knee was hurting really bad. I stopped at the store and picked up a thermometer, because he felt very warm, and I didn't want to drive all the way home and find out we had to head back into town, because he had a fever.



While it was low grade, he did have a fever. I called the clinic and was told to give him some tylenol and keep an eye on him. So we headed out to Falcon, picked up Oliver and Warren and went home. (Bob had already taken the youngest 2 kids home.)



At home, Simon's temp was up to 100.4. Not bad, but just enough to give me something to worry about. It didn't seem to be getting going up, so I left him home with Bob and took the other kids to church for kingdom kids and Bible study. I was nervous about leaving Simon, but really needed a break.



As soon as Bible study ended, I called home to check on Simon. Simon answered on the first ring and he was crying. He was so broken up that I was unable to understand what he was saying. I talked to Bob and found out that Simon was just very tired and his blankets were all messed up on his bed, and his dog still needed to come in. I told Bob to help him with the bed, and I would take care of the dog when I got home. Then I rushed the other kids into the car and raced home.



Church is only 10 minutes from home, and Simon was already sound asleep by the time we arrived. I checked his temperature while he slept. It was down below 100, so I figured the crisis had passed. I was able to get a good night's sleep!



This morning, I dropped the kids off at school and came home to get Simon for his dentist appointment. This time, he had liquid amoxicillin, which went down so much easier, all 8 teaspoons of it! Then off to the dentist for 2 hours while Simon had 5 cavities on the right side of his mouth filled. He has 1 cavity on the left, but that will be fixed in 2 weeks.



From the dentist, we grabbed a bite to eat in the car and headed into town. First stop we the music store to return the violin. That was hard on me, but had to be done. Then we payed a bill and headed to the clinic for a blood draw and check up.



Simon's hemoglobin was up in the respectable range again, thanks to the transfusion. His platelets, which had been high on Monday, were even higher today. Even his granulcytes were up to 1.8, which is incredible. The platelets have been steadily climbing, which encourages me. His granulcytes may have received a boost from the transfusion. The doctor said that often a rise in one count will pull the other numbers up.



What ever the reason, we will take today's cbc as the gift that it is. It means the next 3 days will be appointment free. The granulcytes are high enough that we will be able to get out of the house for a bit this week-end. It is a glimpse of freedom! I will be able to go to coffee with my friends in the morning, which I haven't been able to do for the last 3 weeks. I'll be able to take mom shopping on Saturday, and not feel guilty about leaving Simon home with Bob.

While I am thrilled with today's counts, I also know that it is a reprieve, not an end. Monday morning, we will be back at the clinic. Hopefully, we will have the results of last Monday's bone marrow tests. Maybe we will have some answers, and maybe not. Regardless of what Monday brings, I am going to enjoy the break and find rest for this very weary mom.

I started off with "First an update," because I have so many things in my head that I have been struggling with this week. My intent was to update and then empty my brain of those questions. I am just too tired to tackle it tonight. Thoughts will have to wait until tomorrow or the week-end.

Taking Back the Violin

When Simon was 4 years old, he saw "Fiddler on the Roof" and he fell in love with the violin. He has wanted to learn to play ever since. This fall, we finally had the opportunity to make his dream become a reality. The school was offering an after school orchestra program!

I signed Simon up and rented his instrument. At first, he was very excited. He loved the IDEA of orchestra, and especially the violin. The trouble was, he wanted to be like Tevya. He wanted to pick up his instrument and be able to play well enough to dance on the roof and play while the sun set!

When he couldn't play like that, he became discouraged and frustrated. It was twice as hard for him to do what the other kids in the group seemed to do with ease. He wanted to give up, but I knew how badly he wanted it in his heart. I couldn't let him give up with out a fight!

After a couple of weeks of watching him become more and more frustrated, I went to the music store and rented a violin for myself. I joined the orchestra so I would be able to learn right along side Simon. Now Simon and I had something that we could do together. (Oliver is also in the orchestra, playing the viola.) I love doing this with my boys. Unfortunately, I enjoy it far more than either one of them. I love to practice, but getting them to practice is like pulling teeth!

For Oliver, the music come easily. If he would spend a small amount of time at it, he would be quite talented. For Simon, it is hard. He hates to practice and he gets upset when he can't keep up, but he still loves orchestra and the idea of being able to play. I am not yet willing to let him give up on his dream so easily.

Since Simon was diagnosed with severe aplastic anemia, he has only been able to attend orchestra once. Even though he attended, he was too exhausted to play. Just holding up his violin wiped him out. His violin has been sitting in its case ever since. While I am not giving up on his dream, or allowing him to give up, I have decided that this particular dream will have to be put on the shelf for now.

Tomorrow morning, Simon has to go in for a transfusion. After that, we will return his violin to the music store. I am telling myself that it is only until he gets his strength back, but it breaks this mother's heart none the less. I wonder how many other dreams will have to be abandoned or postponed as illness consumes his life?

I have told Simon that we will go back to the music store when he gets his strength back. For now, if he feels the urge to play, he is welcome to play mine. I continue to attend orchestra with Oliver. I still love it, but it isn't the same without Simon as my music stand partner.

Now I have a dream. I dream of playing the violin, side by side with Simon, out on the porch during the summer, as we watch the sun set behind Pikes Peak. I don't know when we will get there, but I will not give up on dreams, and I will NEVER GIVE UP on Simon!

Nuts and Bolts of the Past Week

I can't believe it has been almost a week since I have updated my blog! I need to be more diligent!



On Thursday, Simon had a routine appointment that was nothing but routine. His counts were all about the same. His granulcytes were high enough that he didn't need any neupegen, and his hemoglobin was still stable, so no transfusion.



I had a couple of opportunities to work last week, filling in for the office manager at the school. I had a great time and enjoyed feeling productive for a while.

After the doctor spoke to the transplant team, we were discouraged to learn that they do not even want to meet with us until we are 90 days out, or unless things take a turn for the worse. If we reach 90 days and there are no signs of improvement, we will meet with the transplant team in Denver for the first time.

Today, Simon had an appointment and they performed his second bone marrow aspiration. It sounds like a painful procedure, but other than the initial pokes with lidicain, it doesn't bother Simon. (He was even outside playing with Ezri and Beau for a bit tonight!) We do not have to go back to see Dr. Cook until next Monday, but he will call as soon as he has the bone marrow results. That could be as early as Wednesday.

We are still waiting on the results of the HLA testing on the other kids. Dr. Cook expects those early next week, but will call if he hears anything sooner. Those results may very well determine whether we stay in Colorado for the transplant or up root to Seattle.

That very question has been weighing heavy on my heart. I have so much support in both places, and want to do what is best for Simon, keeping in mind the 4 other children I love so dearly. With that in mind, I asked Dr. Cook where he would take his own kids or his grandkids.

Since he has grandkids in Seattle, he said they would go there, but if they lived here in Colorado, he would be comfortable with Denver, especially if they were receiving the marrow from a matched sibling. If, on the other hand, the donor is an unrelated donor, Seattle might look more promising. Transplant with an unmatched donor is far more risky, especially if it is from an adult donor rather than from a cord blood donor.

His suggestion is to meet with the team in Denver and ask them any questions I have, including number of transplants, experience with aplastic anemia, etc. He said that one of the most important aspects of the transplant will be a good connection with the doctors performing it. If we meet with the doctors in Denver and just are not comfortable, he will refer us to Seattle for a second consult.

One advantage to Denver is the fact that it is a smaller center, which would mean more personalized care, without sacrificing quality, in Dr. Cooks opinion.

So, until we have the HLA results on the other kids, I need to put the whole Seattle verses Denver issue aside and focus on here and now!

Besides checking the quality of Simon's marrow, they will perform some other tests on it. One is the PNH test. PNH is a whole different condition, which would move the transplant up. Transplant is the only cure for that one. The other test is chromosomal fragility. I have no idea just what that means, but I figure I will deal with it only if I have to. The prior tests for both of those were either inconclusive or unsuccessful.

With bone marrow aspiration, people imagine a procedure that is far worse than the actual event. Simon is given a local anesthesia and conscious sedation. He feels the needle poke for the local, but when it is over, he can't remember it. His hip will feel bruised for a couple of days, but even that is mild.

Simon's platelets were way up today, at 52! They haven't been that high since he had the platelet transfusion in the hospital before they installed his port! His granulcytes were at .8, which is acceptable. His hemoglobin, how ever, was way down, at 6.4. On Wednesday morning, Simon will go into the hospital for his second transfusion.

That is the nuts and bolts of the past week, as far as Simon's condition goes. Emotionally, I have been all over the place. I have thoughts and feelings that I want to write about, but those will have to wait for another day. It has been a long day, and I need to call it a night!

Unwrapping the Gift

On Friday, I thought about the gifts God has blessed us with as we have gone through this difficult time in our lives. I wondered what gift would be next.

One gift came through this morning in the area of an answered prayer. One looming concern was going to be the loss of a bus to get Warren to and from school. The city bus he has been taking all year is going to be eliminated on April 5. At 8:23 this morning, I received an e-mail from Warren's school. They will be re-routing their buses in order to pick up the kids from Falcon! Warren will be picked up and dropped off at Walmart by the CSEC school bus, starting March 30! He will have to be at the bus stop an half hour earlier than before, but that will actually make it easier to get him to the bus and get back home to get the other kids ready and to school.

As far as Simon, the week-end was one of ups and downs. His energy level has been high, but his body hasn't been able to keep up with what he wants to do. If he is up and running around like he wants, he gets really bad headaches. The headache goes away as soon as he sits down and rests for a few minutes. Being cooped up is starting to take its toll on him. He doesn't feel sick, so he wants to act like a normal 10 year old boy. He can't be a normal 10 year old boy, so he is becoming moody. He has his ups and downs.

Yesterday, we were at the clinic for a routine check. His counts were holding steady. His platelets were at 26. His hemoglobin was at 7.4. Still very low, but no longer dropping. His granulcytes were back down to .5, which is kind of the cut of mark for being able to be around people. While none of the counts were good, they were all acceptable. He is not getting better, but he is also not getting any worse.

The doctor suggested that we get Simon into the dentist to get his teeth cleaned. It would need to be done before he would be able to have the transplant. I took him in last night. One hour before his appointment, he had to have 2000 milligrams of amoxicillin. He had 8 HUGE pills that he had to CHEW! (The smell alone made me want to gag!) He had a hard time getting them down, but once they were down, he was able to keep them down. When they do dental work, bacteria enters the blood stream, so the antibiotics needed to be there to combat anything that might harm Simon. Simon, of course, bled more than normal during the cleaning, but nothing that required any special measures.

Today, I was able to take a break from the medical world and work. It felt good to be back at the school. I love being able to be an occasional part of the incredible work they are doing there. It also was a much needed break.

Simon's doctor was going to talk to the transplant team today. Hopefully, we will know more when we go in on Thursday. Tomorrow will be 6 weeks from the beginning of this journey, 5 weeks from the "official" diagnosis and his first hospital stay. On February 10th, he began his immune suppression treatments. Today, we are 4 weeks from the beginning of that treatment.

How can only 6 weeks feel like a lifetime? In the scheme of things, we are only at the beginning, and yet I am already so very weary! How will I be able to complete this journey? We are probably at least a month away from transplant, perhaps even 2 or 3 months. The transplant journey itself will be another 3 1/2 months and that will be away from home! At least on this part of the journey, we are able to sleep in our own beds most nights and we are together as a family.

As transplant is looking more and more likely, I am trying to learn as much about it as possible. God will have to give me the gift of wisdom for the decisions ahead. On Monday morning, I learned that Children's Hospital in Denver has only done 1 bone marrow transplant for severe aplastic anemia. They have performed a total of only 185 bone marrow transplants. The data is as current as December 31, 2008. That makes me nervous!

Our other option for a hospital at this time would be the Children's Hospital in Seattle, which is part of the Seattle Cancer Care Alliance. They are a leader in bone marrow transplants and have performed 61 for severe aplastic anemia and a total of 2211 bone marrow transplants. I have family in Seattle and a small group of friends out there. Statistically, I like that option much better.

While I do have family and friends in Seattle, my strongest support system is here in Colorado. Denver is only an hour away from home, so I would be able to take turns staying in Denver. Both Bob and Mom would be able to be with Simon for periods of time, allowing me to spend some time at home with the other 4 children. The other children would be able to go to Denver on the week-ends to see their brother. Emotionally, I do not know if I would be able to cope with being away from my children for 3 1/2 months. I worry about the toll that would have on Warren, Oliver, Ezri, and Beau. It is going to be hard enough only seeing them on week-ends.

And then a part of me says that with so very much at stake, Simon's very life, how can I not give up 3 1/2 months of being with the other kids? My heart is telling me to stick with Denver, but my head is screaming for Seattle. I need wisdom like I have never needed it before!

Then those blasted statistics have been very discouraging. Simon needs the gift of a matched donor among his siblings. With a sibling match, survival rate at 5 years out is 80-90%. With a matched, unrelated donor, survival rate drops significantly to only 60%. I have to constantly remind myself that my son is not a statistic. He is a living, breathing human being, and he is my child. Regardless of what the statistics say, I can never lose sight of the gift of hope.

This past week has been filled with a combination of hope and discouragement. Moments of joy and moments of sorrow. I have to recognize the joy for the gift that it is, and I have to find strength in the knowledge that sorrow may last for the night, but joy comes in the morning.

And I have to give thanks.

Looking to the Sun

It is 3:30 on Friday afternoon, and I am SO ready for the week-end! I am sitting at the clinic, typing this, while Simon gets his once a month dose of pentamadien and another dose of nuepegen. This is the fifth day in a row that we have been here!

Yesterday, I was here with all of the kids for HLA blood typing, to determine whether or not any of Simon's siblings are a match for Simon's bone marrow transplant. They had to take 4 LARGE vials of blood from each of the kids.

Beau went first, and he was such a trooper. He loves having his blood taken! He watched while they poked him and he watched as they drained his blood. He thought it was pretty cool!

Ezri was next. She was nervous, but did fantastic. She did not like being poked, but didn't fuss at all. As they filled the last vial, she started feeling dizzy. Her face had totally turned green! We got her some juice, and she perked right up. (That and the promise of being able to chose a toy from the treasure box when all 4 kids were done!)

Oliver and Warren were the last to go. To them, it was no big deal.

Yesterday, the clinic was very busy, and I had all 5 kids with me, so I did not have the opportunity to ask all the questions that needed asking. Today, I came prepared with the 2 big ones.

It will take 1-2 weeks to learn if we have a match. In the mean time, Simon will continue to visit the clinic regularly. We had been coming twice a week, but this week, we have been in every day, due to his low counts. The neupegen he has been receiving is to boost his granulcytes, to prevent infection.

The pentamadein is to prevent bacteria from overtaking his lungs. He gets that through the IV every 4 weeks. It takes about an hour for that medicine and 30 minutes for the neupegen.

While it has been a very long and busy week, it has also been a good week. Simon's energy levels have been fantastic. (I only wish I could keep up with him!) He got the same cold the rest of the family has been fighting, but he didn't get as sick as the rest of us! His hemoglobin had been dropping steadily, but it appears to have leveled off. It has been right at or near 7 for 3 days in a row now. We have made it through another week without a blood transfusion. As long as his hemoglobin remains steady AND he is not symptomatic, he will be able to avoid transfusion.

Transfusions have to be done in the hospital. The more he has, the more problems he will have with his transplant.

The next major hurdle we will be facing is the transplant. It will require 4-8 weeks of in hospital stay. Not only that, but he will be required to stay up in Denver for 100 days! They do have a place for transplant patients and family to stay during those 100 days. As long as Bob is in town, we will be able to split our time between Denver and home with the other kids.

If I thought life could not get any more complicated, I was sadly mistaken. Warren came home from school with a letter from the city, notifying us of the fact that his bus will be canceled, as of April 5. All I can do is laugh!

The absurdity of it all just strikes me as funny, for some odd reason. God has more than taken care of our needs from the day we first went to the doctor's office to have a rash looked at. Needs we did not even realize we would have, have been met in so many unexpected ways. Not only have our physical needs been met, but also our emotional and spiritual needs. We have met many new people along the way, and been so blessed by the generosity of strangers who are becoming fast friends!

I am sitting back and laughing, wondering what new and wonderful plan God has for us in the coming months. I wonder what miracle He will pull out of the hat to get Warren to school and manage the 3 kids at PPSEL and Simon and one parent up in Denver. I have no idea how it will happen, but God is so good, and He will once again surprise and amaze us. (I kind of feel like a little kid at Christmas, wondering what wonderful gift I will unwrap next!)

The 4 healthy children received a package in the mail this week from an organization called SuperSibs. It is a group that acknowledges the difficulties the other kids in a family go through when a critical illness strikes a sibling. In the package was a book for teens on how to cope when a brother or sister is diagnosed with cancer.

In thumbing through the book, I found a quote that really struck me as profound and simple at the same time. It spoke volumes of truth and has helped to keep me focused on the positive. "Look to the sun, and the shadows fall behind you." As I have turned my heart to God, my sun, I have witnessed the shadows fall behind me!

Wednesday Night Update

Just a quick update after today's appointment.

Simon's platelets are up slightly. They seem to be the part of his counts that varies the most.

His white count hasn't changed from yesterday. The granulcytes are exactly where they were yesterday. The doctor said it may take up to a week for the nuepregen to start working.

His hemoglobin continues to fall. If it continues to drop, he will have to go to the hospital on Friday for a transfusion. Because it is so low, something like a nose bleed will be all the more dangerous.

Given Simon's counts, he should be a very sick little boy. He should be experiencing headaches and extreme fatigue. His bruising should be getting worse, and nosebleeds should not be stopping. God is so good, and I can tell He has sent his angels to watch over Simon. His energy level continues to be good. He has not had any headaches since the first few weeks. While he has had a few nose bleeds, most have been minor and have stopped quickly. He still has bruises, but they appear to be lessening.

I am remembering my morning walk and the hope of spring in the green grass peaking out from the ground. And I shall go to bed tonight full of hope of Simon's recovery!

Hope in the midst of Despair

We have had a very mild winter in Colorado this year. The mild temperatures have been nice. Our heating bill has been almost affordable! The mild days have been a joy, and it has been nice to avoid the days of being stuck at home because of the snow.

Unfortunately, the fantastic winter has created a new problem going forward. As I look out over our pastures, all is brown and dry. The blowing winds add to the fire danger. If we don't get some moisture, it will be a challenge to feed the horses come summer. Without snow or rain, the grass will not grow adequately enough to provide the nourishment they need. Not only will I have to buy hay, but also, the price of hay will be high.

One of my favorite things about Colorado has been the spring times. In the fall, everything turns brown. Then we have winter, mixed with sunshine and snow. In the spring, we get the rains or snow storms, that move through rapidly. (March is actually our heaviest snow fall month.) After the moisture, the world comes to life. All that was brown and dead looking, is suddenly green and bright and full of hope. As the world around me springs to life, I can't help but be full of joy and hope myself.

This winter has been so void of moisture that I have been fearful of missing the spring awakening. Just this morning, I was thinking about picking up some sprinklers for watering the grasses and trees near the house. The brown of the fields matched the feelings in my heart.

When I returned home from dropping off the kids this morning, I had to cross the fields to fetch a stubborn horse. The sun was shinning, it was warm, and the winds were calm. Today is a busy day, but I didn't mind too much. (Breaks from all things medical are too rare these days!)

Bob drove me down to the horse, so I only had to walk back up the hill. As I said, it was a great morning for a walk. I needed the excuse to go out and do it!

Catching the horse was easy. He love peppermints, and as soon as he heard the crinkle of the wrapper in my hand, he came right to me and let me put the halter on.

Then we began the hike. From the house, looking down on the pasture, everything looks so brown and bleak. As I walked Shaw, I saw something entirely different. Yeah, the grass was brown, but from my new vantage point, I was able to see the green poking up from the ground.

In spite of the dryness, in spite of the despair, hope is springing up from the ground. When I stood back and looked at the whole pasture, all I saw was the desolation. From up close, however, I saw new growth. I saw the hope that comes with spring.

In life, sometimes we need the eagles view, to see the whole picture. Other times, we need to look more closely, at the smaller accomplishments.

When I look at this week as a whole, I am overwhelmed and discouraged. I need to look at the smaller successes and rejoice.

Simon has made it through the last month with only 1 red blood transfusion. Another one may be coming up soon, but for now, I need to focus on how long he has been able to go without!

Simon has a cold, but it is getting better, and it never did get bad! His white counts are so low that it should have sent him to the hospital!

Bob will probably be back on the road soon, but we have had him home for the past month, when we needed him most!

Warren may be losing his bus come April, but God will show us a way through that too!

One friend reminded me yesterday that "If He leads you to it, He will bring you through it."

Another friend sent me some powerful words from a devotional. "O my child, do not weep, I am doing a beautiful work. Stress and pressure and pain are often the path to victory and understanding. I am in the midst, and I am a strong deliverer. You need not be concerned. Courage is the greatest contribution you can make at this point. To be strong now will make the path of recovery easier. Faith is an essential ingredient in every solution...often it is the solution itself. Never underestimate the power of Faith. Hold fast. Trust. _Unseen angels assist you._ Doors are opening to let you pass into safely"

And as the green grass is peaking up from the ground, I am seeing hope spring up in the midst of despair. I am seeking the courage needed to reach those doors that lead to safety. I am trusting that faith will indeed be the solution, and I am holding fast!

"The Lord is my shepherd, I shall not me in want. He makes me lie down in green pastures, He leads me beside quiet waters, He restores my soul." Psalm 23:1-3a.

Fear of Drowning, or Looking for Hope.

I remember a day at the beach from my childhood. I don't know how old I was, but I hadn't started school yet. My mom and one of my aunts were enjoying the sun. I was playing at the water's edge. The waves would come up and go back out. I was at the line between the dry sand and the surf. What water was there, had to have been less than one inch deep. I remember the water coming in and as it went back out, I felt like I was being pulled out to sea with it. I can remember the sensation as if it was yesterday. I remember feeling small and frightened. I felt paralyzed, unable to pull against the tide to the safety of the dry sand. I knew I was drowning and there was nothing I could do to stop it!



Today, I have that same sensation. I feel that I am being pulled out to see, and no matter how hard I fight against it, I can't stop the tremendous force of the ocean. I am overwhelmed by the circumstances life has thrown at me, and I feel like I am drowning.



Yesterday morning, Simon's blood counts were not good. While his platelets were up slightly, his red count had dropped. His granulcytes level had dropped below the 500 threshold. White cells only last a very short time, so they cannot be transfused. There is a new medicine available that is supposed to help increase the granulcytes. We are blessed, in that our insurance does not require a prior authorization for the medicine. Simon received his first dose yesterday through his port.



The hope was that today his granulcytes would be above the 500 mark, but they have hardly budged, so he received another round today. His hemoglobin has dropped low enough that a transfusion is likely. If it continues to fall, we will have to schedule a trip to the hospital for another transfusion.



On Thursday afternoon, the entire family has to go in for blood work, looking for a bone marrow match. I am exhausted and trying to keep my head above water. While my cold is getting better, it still plagues me. I wonder how much more I can endure before I myself collapse. My head is pounding, and I just want to sleep.



Adding to my distress is the knowledge that Bob will be leaving soon. While there is nothing definite, it is looking like he will be back on the road again soon. Also, come April, I will have to figure out how to get Warren to and from school, as the bus he rides is scheduled to be canceled.



As difficult as the last 4 weeks have been, I am trying to wrap my head around doing this as a single parent. How will I be able to get the 4 healthy kids where they need to be and take care of Simon? Come April, I'll be looking at the added 2 trips across town to get Warren to and from school. April will also be about the time I'll need to add trips to Denver to the schedule. The transplant team is up at Children's Hospital in Denver, and I don't know how I will do it.



Tomorrow, I have a meeting at Warren's school. It is the meeting that was supposed to take place the same day that we ended up in the ER for Simon's rash. The day this whole ordeal began. The meeting is to come up with an advanced learning plan for Warren. He scored in the 99th percentile on his cognitive abilities test, and the school wants to make sure they are meeting his needs as a gifted learner.



Warren is also my son, and I am excited for the prospects for his future. While I want to be celebrating his achievement, all I can think about is how I can make the meeting there and get Simon to his unplanned appointment, not to mention picking the other 3 kids up from school on the other side of town. How will I do this next month when Bob is gone? If I feel like I am drowning now, how will I cope then?

In my exhausted state, it is hard to find hope, and yet search for it I must. I find hope in the fact that Simon is in good spirits. I find hope in the fact that according to his blood counts, he should be a very sick little boy, and yet he is not. I find hope in the fact that his hemoglobin is so low that he should barely be getting off of the couch, and yet he continues to play with the other kids. He is up and about and active.

And finally, I find hope in the knowledge that God is bigger than the boogie man. He has yet to lead me anywhere that He did not also provide me with the tools necessary to make the journey. While I may be out of gas, God's tank is full, and never runs dry. He is stronger than the strongest rip tide, and I only need hold out my hand and He will save me from drowning.

The End of My Rope

This has been a tough week in so many ways. In addition to the every day stress of dealing with Simon's illness, we have added a massive cold that is making its' way around the house. Sore throats, coughs, runny noses, general crabbiness, have been the norm.

My head feels like a giant balloon, only much heavier. The pressure is building constantly, ready to explode at any moment. My neck is struggling to hold up the extra weight. My ears are so plugged up that I am having trouble hearing. Sinus colds are bad enough, but this one has been compounded by my exhaustion.

Tending to Simon, and the other 3 kids who were sick this week, has wiped me out. The late night in the ER on Wednesday robbed me of much needed, precious sleep. Illness is a luxury at this time that I cannot afford!

I am feeling like I have reached the end of my rope, and am holding on for dear life. If I let go, I'll fall into the abyss. I haven't the strength to climb back up the rope.

Others have seen in me a strength I certainly do not feel. As I have struggled with my faith and questioned my lack of faith, others have been encouraged and even challenged by my faith. The Bible talks of faith the size of a mustard seed being able to move mountains, and this is a grand thing, because right now, I am wondering if my faith is even that big.

The summer before my 9th grade year, I went to Camp Castaway, a Young Life Camp on Lake Pelican in Minnesota. It was a great experience. One of the activities was para sailing. The boat pulled me off of the dock with a parachute strapped to my back. As I soared over the lake, I was able to see so many different places on the lake, places that I could only see from my new vantage point, not from the ground. I am thankful that God can see the whole picture in the situation I now find myself.

At Camp Castaway, we also spent a lot of time in activities that taught us that we can often do things that at first seem impossible if we work together as a team and if we learn to trust one another. While the path I am on right now often appears to be impassable, I am learning to rely on my team of friends and family and prayer warriors to help me through the obstacles placed before me.

This morning, as I struggled to fight back the tears that come from exhaustion and a pounding head, I thought about being at the end of my rope. From the end of the rope, there is no where to go but up. I have no strength for the climb.

Then I hear the still small voice whisper in my ear. "Trust Me." "But Lord, I am too tired!" "Trust Me." "But Lord, I haven't the strength." "Trust Me." "But Lord, I am at the end!" "Trust Me."

It was then that I was reminded of camp so many years ago. From my perspective, it may look as though I am indeed at the very end of my rope, but God can see far more than I can. Although the prospect of traveling further down the rope is not one I relish, I am thankful that I can trust my God who knows exactly how much rope there is left, and won't take me beyond the rope's end. He will not let me slide into the abyss.! The rope is longer than I can perceive, and while I may not have the strength to climb back up it, God has given me a team that will help me find the way to the top, just as our team was able to find a way to get every member up and over the insurmountable wall at camp.

And I give thanks for my God of trust, and I give thanks for the strength that comes from the team that surrounds me.

Wednesday Night's ER Visit

My plans and God's plans aren't always the same. I had planned on attending a board meeting, but God's plans led me to the ER instead. Simon awoke this morning with a cough, which had me nervous. I went to a meeting at Warren's school, and then to work for a couple of hours. Bob stayed with Simon, checking his temperature every couple of hours, and answering phone calls from me.

When I arrived home, Simon was doing great. His cough was better, and he was more energetic than he has been in the last 5 days. In good spirits, I prepared dinner and made plans to attend a school board meeting. As I pulled the biscuits out of the oven, Simon called out that his nose was bleeding. We have had several false alarms over the last 4 weeks, so I wasn't too concerned.

When I walked into the living room, I knew this time was different. The tissue in Simon's hand was bright red. There was more blood than I had expected, and the color was wrong. Fruit punch was coming from his nose. It was lighter in color than it had been only 2 days earlier. I got the nose clip put of Simon's fanny pack and started watching the clock. I tried to remove the clip after 5 minutes. Still gushing. 10 minutes. No change.

Mom fed the other kids while I gathered up needed items for the trip into town. 15 minutes and I called the clinic. Then we waited for the call back. After 15 minutes, I called the service back and told them we were headed to the ER, leaving my cell phone number for a call back. From the end of the driveway until the school, we are in a cell phone dead zone. It is only a 10 minute drive, but tonight it seemed to take forever. At one point, I saw that I had a message, but was unable to retrieve it.

As soon as we cleared the trees, I listened to the message from the doctor, confirming our decision to head to the ER. He also asked that we have the ER doctor contact him as soon he examined Simon.

Hurry up and wait. The ER staff took Simon's vitals, and now we sit and wait in the waiting room. We have been here for close to an hour, sitting in the waiting room with my vulnerable son and sick people. Just as I finished typing that last sentence, they finally sent us to a room.

Now we wait for the doctor. Simon's poor nose is going to be black and blue by the time they remove the clip! I need to read my book, "The Promise: God's Purpose and Plan For When Life Hurts." My precious Simon is hurting right now and my mother's heart is aching for him and his future.

The above was typed into my blackberry last night as we sat in the waiting room in the ER. It was about 45 minutes after we had a room that someone finally came to check on Simon. By then, I had taken the clip off and his bleeding had stopped.

Frustration was my constant companion last night. When my oldest 2 boys were around 7 and 4, they had been playing in their room and Oliver came out to tattle on his brother. Warren had a plastic suit of Christian armor. Oliver came running into the kitchen. "Mom, Warren hit me in the head with the belt of truth!" Ever since then, I always recall that story when I feel someone has a deep need to be hit in the head with the belt of truth!

Being a non-violent person, I am, by nature opposed to violence. However, last night, I seriously would have liked to smack a physician's assistant over the head with the belt of truth! She entered the room, looked up Simon's nose with her light and saw no source for the bleeding. Her suggestion was to give Simon some saline and send him home! No blood work, no talking to his doctor, no nothing.

While she did not say it, I felt that she was thinking we were stupid people who just spent $100 dollars on an emergency room co-pay for a simple nose bleed. She just didn't get it. She was condescending and left me feeling very frustrated. I told her that Simon's doctor wanted a call from the ER doctor before we were sent home. She agreed, although some what grudgingly, to speak to the doctor on the floor.

I don't know if he explained to her exactly what aplastic anemia was, or if they actually spoke to Dr. Cook, but after that, they did come and do some blood work. Then we waited for another hour for those results to come in.

Simon's platelets were only down slightly from Monday's counts and the bleeding had stopped. Dr. Cook gave the ER doctor instructions for us to pick up some Afrin to shrink the blood vessels in Simon's nose and to follow up with him, and we were sent home.

It was after 10 by the time we left the ER, 11 by the time we stopped at the store and reached home. I was exhausted, frustrated, and angry. I took a very sick child to the ER and left feeling belittled and stupid. It was all I could do to hold myself together on the ride home. I just wanted to cry and scream and rant and rage. Only God gave me the strength to keep it together. (I probably wouldn't have bothered, but did not want to upset or scare Simon.)

This morning, Simon had and appointment at the clinic. They were flabbergasted by our treatment. The fact that they would make such a vulnerable child wait in the small seating area with several sick people was inexcusable. This morning's counts showed Simon's granulcytes down to .6, with .5 being the critical number, requiring special treatment. His hemoglobin was also down, probably from the blood loss of the night before.

In future emergencies, we will take the extra time to drive to the other side of town, where they have a pediatric ER. It is also the hospital where Simon had his surgery and has already received 2 transfusions, so they have his information on file with the blood bank and standing orders if he needs platelets.

I was thankful for today's clinic visit. It helped me to be reassured that I had not over-reacted in last night's trip to the ER. I was reassured that Simon is still okay, in spite of the bumbling of last night. He does have a nasty cough, but his lungs sound fine and he has not had any fever, so it is not something to worry about at this point in time.

This morning, before the doctor's appointment, Bob and I were able to attend a worm expert day in Beau's kindergarten class. I am amazed by the knowledge those little children possess! Perhaps some of those scientists will grow up to become doctors or researchers who can help children like Simon.

Tomorrow, I have to miss my weekly coffee with my girl friends, but I am blessed to have the opportunity to substitute in the fourth grade classroom. I have missed teaching since Simon became ill. It is so hard to believe that we are only 4 weeks out from the beginning of this whole ordeal. (In fact, yesterday was EXACTLY 4 weeks from the day we learned that something was seriously wrong with Simon. We were even in the same room in the ER where we first heard those words which so changed our lives.)

Now it is almost 8 o'clock. All of the kids, except for Warren, are in bed. Bob is already asleep, and I am going to post this blog and call it a night myself. It has been a VERY long day, and I can't keep my eyes open any longer.

Next Thursday, the whole family is scheduled to have our blood tested as possible bone marrow matches.