Yesterday, Sunday, was a glorious day! We attended church as an entire family! It's amazing how adversity can make the simple things in life so important and precious. William's energy level is up and he seems like a regular 8 year old boy (except at meal time). He gets a bit winded and tired after a while, but I do too! It's a bit like the calm before the storm. Round 5 of chemo starts Thursday.
I have a quote by Thoreau framed and hanging in my family room that says, "Simplify, Simplify, Simplify." In the past several years as I've weathered a home full of 5 little boys, I've often had to simplify. The span from oldest to youngest is just under 5 years with a set of twins tucked in there. So I've spent the past several years assessing my priorities and capacities. I no longer regularly attend such activities as book club, park days, girls night out. My boys don't participate in every available sport at the youngest allowable age, and I've learned that I can get by without a daily shower. And I'm happy. Really happy. Really tired, but still happy. I view the past few years, although exhausting, as a tender mercy from the Lord because of the preparation it afforded me in knowing how to simplify life and accept those changes cheerfully.
I also attribute this attitude to my parents. My mother has always been tied to the home because of my twin sister who has a severe form of cerebral palsy and is as dependent as an infant and the fact that 8 children were spread over 19 years! My parents have never had a social life like many friends and neighbors. Our vacations were never too extravagant, usually wheelchair accessible in nature. But the home was full of joy and sibling squabbles and children complaining of unfair treatment, and curfew negotiations.... The point is, I feel I grew up in a traditional and "simplified" home with parents who never express bitterness or resentment for the challenges they face. And I'm trying to have that same attitude.
I also married into a wonderful, tight-knit family. I have a loving, patient, calm, appreciative, intelligent husband who learned these qualities from the example of his parents. One of the interesting and helpful additions he brought into our marriage is a valued importance of mental health. Thankfully this is not due to former issues or years of instability, but rather his grandmother was a psychologist and his father is a psychiatrist.
I want to preface what I want to share by first sharing some of the purposes to this blog. Some are personal, but include: to have a personal record for our family, to update family and friends, personal therapy, and to help others facing similar challenges.
When we found out William had cancer, we received floods of information and advice from the medical staff. Most of it revolved around William's care and upcoming treatment. But some very important information was for me and Ryan, specifically. We were reminded that our physical and mental health would be equally important in this whole process. We were counseled to make our personal physicians aware of our family situation and make sure we had people in place to monitor our own physical and mental well-being. This also helps to insure the safety and proper care of our children. Our dear friends, Dan and Lisa, have taken on the monitoring roll and we've had some good laughs and some reality and stress checks along the way.
Ryan and I feel enormously stressed at times (and with good cause), but we feel we have solid coping mechanisms to deal with the stress appropriately. We're not perfect. We get upset with each other at times, but when we do, we try to respect the fact that we feel our own highs and lows and different points. We know we each have to be strong for one another, but that sometimes means carrying the other until they can get back up. And that's not easy either. We've had our separate meltdowns and shared a few too. We've also both visited our own doctors, separately.
We didn't sleep much the first two months. Even when we tried to sleep, we'd wake up before 5 AM or toss and turn all night. The anxiety at the beginning was suffocating at times. We still have sleepless nights when we worry. (We're barely 3 months into this journey). And many more await us. Regardless of our efforts, we are exhausted. When asked about our sleeping habits, the doctor explained that although we may think we are sleeping, due to our stress, it is not quality sleep.
We now both have prescription sleep aids we take when needed. For us, our lack of sleep was affecting our ability to maintain focus, process our stresses, stay mentally acute, and have physical strength. I put this out there because I've learned from Ryan's family that mental health is often misunderstood. Medications can do wonders, counseling and therapy are helpful, and no one should be ashamed of admitting they can't do it all on their own.
And that's why it takes villages.
Monday, August 30, 2010
Friday, August 27, 2010
Juggling
Whoops! I've been so exhausted all week, I didn't realize I hadn't posted since Monday. I thought of the blog each night, but always thought I'd get around to it the next day. We are NOT back in the hospital (doing the happy dance)! William is on his "good week" and the mouth sores have finally healed so the only excuse for not eating is a lack of appetite and I'm trying to convince him that that is not a valid excuse right now! Hah! I hope I'm not creating poor eating habits for him later in life, but I guess that should only be a worry if he actually ate more. He's been working on a Jamba Juice all day, but got a bean burrito down at lunch. A whole burrito! (We celebrate the little things!)
Now the pressure is on for weight gain. He is 59 lbs. and had his final I.V. feeding last night. The I.V. nutrition can stress the liver (his liver already has cancer cells in it) and cause other adverse side effects if given for a long period of time so his doctors don't want him on it more than 30 days. So he's getting a break since he'll very likely be back on it during the month we are in S.F. for the stem cell transplant. I bought him a cool K'nex roller coaster if he can get to 60 lbs. and maintain or improve that for a week. So he sits and looks at the box every day and if you stop by, he'll probably show you the box and explain our "deal" (bribe!). He seems motivated and I let him put it on the table while he eats.
We had a clinic visit on Thursday and met with the doctor. William's blood counts are good and they canceled our Monday visit since things look to be on the rise. We check in next Thursday for round 5--the very nauseating cocktail we had for round 3. The main things I have to watch for until then are bleeding and bruising since his platelets, although acceptable, aren't super high and may drop, necessitating another transfusion.
The past week has been overwhelming in many ways for me and Ryan. It's sometimes difficult to figure out why we feel so stressed and exhausted when William finally gets out of the hospital and things seem to be on the upswing and we are all together as a family. We are realizing that during the stressful times, we are running on adrenaline and focusing specifically on the bare essentials. Then, just when we think things should be getting better, the toll of finding our place in the middle of the chaotic mess of our lives, feels like we are gasping for air at the surface. No one panic. I think it's a normal, but sometimes unexpected, cycle of life and it just takes some recognizing and constant readjustment of priorities to make sure the family is functioning as well as can be (considering all circumstances).
One of the difficult things about our lives right now is figuring out when we need help and with what we need help and what things we need to just slide off our plate completely. Some days, like any family has, are super busy. Many people offer to help, and I will accept help, but we know that there are even tougher days ahead when help will be more essential. Juggling carpools and soccer schedules feels normal and we don't feel that very often these days. There are going to be many, many days when a friend or neighbor will be doing the carpooling and soccer practices and games. So we want to do them when we can. When William was diagnosed we tried to think through our lives for the next year as best we could and think of what our reality would be like. We've put many things on hold that may be still important to us, but can wait a year or whatever time frame necessary.
Today an army of people showed up to tidy up our yard---people from church, people from school, people from the neighborhood. I was amazed and so touched. I was fully intending on being out there to help, but was still in the midst of trying to still get my twins off to school, clean up the kitchen, and get William to eat and take his medication. I haven't had a chance to look on the helping hands website much and I thought 4-5 people would come. It was incredible as probably over a dozen people filed into the backyard and started working. I don't think I even saw all the faces of those who came. Many tasks were accomplished that I didn't even expect to be done. Thank you! Thank you! for lightening our load today and touching our lives with service. I'm getting all weepy which makes my eyes sting which makes me then have to go to bed early and I have a few things I still need to get done tonight! I felt a great deal of love today and I'm so grateful.
Now the pressure is on for weight gain. He is 59 lbs. and had his final I.V. feeding last night. The I.V. nutrition can stress the liver (his liver already has cancer cells in it) and cause other adverse side effects if given for a long period of time so his doctors don't want him on it more than 30 days. So he's getting a break since he'll very likely be back on it during the month we are in S.F. for the stem cell transplant. I bought him a cool K'nex roller coaster if he can get to 60 lbs. and maintain or improve that for a week. So he sits and looks at the box every day and if you stop by, he'll probably show you the box and explain our "deal" (bribe!). He seems motivated and I let him put it on the table while he eats.
We had a clinic visit on Thursday and met with the doctor. William's blood counts are good and they canceled our Monday visit since things look to be on the rise. We check in next Thursday for round 5--the very nauseating cocktail we had for round 3. The main things I have to watch for until then are bleeding and bruising since his platelets, although acceptable, aren't super high and may drop, necessitating another transfusion.
The past week has been overwhelming in many ways for me and Ryan. It's sometimes difficult to figure out why we feel so stressed and exhausted when William finally gets out of the hospital and things seem to be on the upswing and we are all together as a family. We are realizing that during the stressful times, we are running on adrenaline and focusing specifically on the bare essentials. Then, just when we think things should be getting better, the toll of finding our place in the middle of the chaotic mess of our lives, feels like we are gasping for air at the surface. No one panic. I think it's a normal, but sometimes unexpected, cycle of life and it just takes some recognizing and constant readjustment of priorities to make sure the family is functioning as well as can be (considering all circumstances).
One of the difficult things about our lives right now is figuring out when we need help and with what we need help and what things we need to just slide off our plate completely. Some days, like any family has, are super busy. Many people offer to help, and I will accept help, but we know that there are even tougher days ahead when help will be more essential. Juggling carpools and soccer schedules feels normal and we don't feel that very often these days. There are going to be many, many days when a friend or neighbor will be doing the carpooling and soccer practices and games. So we want to do them when we can. When William was diagnosed we tried to think through our lives for the next year as best we could and think of what our reality would be like. We've put many things on hold that may be still important to us, but can wait a year or whatever time frame necessary.
Today an army of people showed up to tidy up our yard---people from church, people from school, people from the neighborhood. I was amazed and so touched. I was fully intending on being out there to help, but was still in the midst of trying to still get my twins off to school, clean up the kitchen, and get William to eat and take his medication. I haven't had a chance to look on the helping hands website much and I thought 4-5 people would come. It was incredible as probably over a dozen people filed into the backyard and started working. I don't think I even saw all the faces of those who came. Many tasks were accomplished that I didn't even expect to be done. Thank you! Thank you! for lightening our load today and touching our lives with service. I'm getting all weepy which makes my eyes sting which makes me then have to go to bed early and I have a few things I still need to get done tonight! I felt a great deal of love today and I'm so grateful.
Monday, August 23, 2010
Garden Therapy
Today flew by as I tried to get my feet under me. I tried to catch up on what came home in the school folders on Friday, sort through the papers and mail that stacked up during the hospital stay, ran to Costco, and made 4 pints of pesto with the basil that is flourishing in our garden. I picked 2 huge zucchinis (the garden wasn't checked for a few days!) and 8 cups of beans and a dozen tomatoes and carrots. I wish William had more of his appetite back to help eat all this and I wish I had more time to try all the yummy recipes I collected when I had time to dream of our harvest. The variety of grilling accessories that Ryan got for Father's day in anticipation of many vegetable grilling evenings are still in wrapped in their packaging. At least I now know we can grow something. Our previous record isn't even worth mentioning.
As I was alone with my thoughts while checking the garden, I began to make gardening/life analogies. I thought about how miraculous it seems that our garden has done so well when we've neglected it the past 3 months. We put a great deal of effort into it the first few months of the year. We prepared the ground, built the structures (boxes, trellis', irrigation), researched plants, created a blueprint, planted and then sat back and waited for mother nature to work her magic or wreak her havoc. She did both. But not necessarily all in the garden.
There are many analogies here, but the one that stood out to me is how, like a garden needing to be tended and periodically fertilized, we go through life continually tending our physical and spiritual needs. We never know when the storms may hit or how long the droughts will last, but we hope that our preparation will protect us from complete ruin. Occasionally we need some fertilizer to boost productivity when something unexpected comes, but if the foundation was carefully constructed, then a harvest will still occur.
The harvest is rarely as we expect. Some seasons will yield plenty and some will be meager. Sometimes it will be because of error on the gardener's part and sometimes it will be a result of things beyond the gardener's control. There are so many life lessons in a garden, i.e. faith and patience, but this one stood out to me today. I have a strong foundation physically and spiritually. Some days I may falter and start to wither, but other days I'm well-watered and have an abundance to give. But it's a daily process to keep both aspects of life from complete ruin.
Given this is a blog and not a well organized essay, my thoughts come out a bit like a stream of consciousness exercise. That's where this becomes good therapy. And my garden is good therapy.
As I was alone with my thoughts while checking the garden, I began to make gardening/life analogies. I thought about how miraculous it seems that our garden has done so well when we've neglected it the past 3 months. We put a great deal of effort into it the first few months of the year. We prepared the ground, built the structures (boxes, trellis', irrigation), researched plants, created a blueprint, planted and then sat back and waited for mother nature to work her magic or wreak her havoc. She did both. But not necessarily all in the garden.
There are many analogies here, but the one that stood out to me is how, like a garden needing to be tended and periodically fertilized, we go through life continually tending our physical and spiritual needs. We never know when the storms may hit or how long the droughts will last, but we hope that our preparation will protect us from complete ruin. Occasionally we need some fertilizer to boost productivity when something unexpected comes, but if the foundation was carefully constructed, then a harvest will still occur.
The harvest is rarely as we expect. Some seasons will yield plenty and some will be meager. Sometimes it will be because of error on the gardener's part and sometimes it will be a result of things beyond the gardener's control. There are so many life lessons in a garden, i.e. faith and patience, but this one stood out to me today. I have a strong foundation physically and spiritually. Some days I may falter and start to wither, but other days I'm well-watered and have an abundance to give. But it's a daily process to keep both aspects of life from complete ruin.
Given this is a blog and not a well organized essay, my thoughts come out a bit like a stream of consciousness exercise. That's where this becomes good therapy. And my garden is good therapy.
Sunday, August 22, 2010
Boosts
Saturday:
- Said goodbye to my sister, Angela. Thanks for the help!
- William got a platelet and a blood transfusion (larger dose this time).
- Farmed the kids out during church so I could lead the music without distraction, but still cried through the meeting. The talk on patience and enduring was comforting and hard at the same time. One of these Sundays I'll make it through with dry eyes.
- William was released from the hospital, and came home full of energy. Thanks, blood! His blood counts still show his immune system down, but beginning to recover.
- Ryan and I are exhausted, but grateful we got out a couple times together in the evenings while Angela was here and before we landed back in the hospital. We're trying to remember that our marriage can't be ignored. I'm glad I married a wonderful man who can handle a lot of neglect!
Friday, August 20, 2010
Almost Made It!
If William was going to follow trend, he should have landed back in the hospital yesterday afternoon (Thurs). I took his temperature often throughout the day. No fevers! Yay! He made it past his trend. He seemed good and perky and although the mouth sores have begun their cycle, he managed to eat a little food. After dinner, he announced he was really tired and wanted to go to bed early! Music to my ears! But not from William. I was worried, but chalked it up to having made it through 4 rounds of chemo and the exhausting toll of it all on his little body. He was sound asleep by 6:45 PM.
I checked his temperature at midnight and he had a fever of 100.8. I'm supposed to call at 100.3 or higher. I suspected that he was neutropenic by now and that would mean automatic hospital admittance. Our room was warm, windows closed, and William had on 2 blankets. We opened windows, ran the AC and removed his blankets. His fever disappeared. (I think that may have been cheating, but that's how bad I didn't want to go to the hospital.) I couldn't sleep out of worry and woke up every hour throughout the night to take his temperature. If he had a fever, I would take it again and wait a few more minutes and take it again until I felt justified in going back to sleep. I sound like an awful, selfish mother, but I must add that we had a clinic visit to see the doctor and have blood drawn in the morning. I really wasn't that negligent. It's kind of like waiting for the contractions to really get going.
We showed up to the clinic visit fully packed to be admitted. I was honest about my night's activities with the thermometer so they drew blood for blood cultures (infection). His ANC was 0 (no immune system) and because he had a fever during the night, we are now sitting on the sixth floor of the hospital for at least the next 48 hours. The tender mercy here is that we finally have a private room. I really needed that for my own sanity. (see the stress post that Lisa trumped!) :)
Thankfully, my sister, Angela, is here so I had the kids covered without any effort. The main logic and purpose of her visit this week was to help with unexpected hospital stays. Do I say I'm glad we didn't disappoint? She's been fantastic with the school drop offs and pick ups and bedtimes and meals and endless entertainment. I am truly blessed to have such an amazing, supportive family. And having 7 siblings has it perks in times like these!
I checked his temperature at midnight and he had a fever of 100.8. I'm supposed to call at 100.3 or higher. I suspected that he was neutropenic by now and that would mean automatic hospital admittance. Our room was warm, windows closed, and William had on 2 blankets. We opened windows, ran the AC and removed his blankets. His fever disappeared. (I think that may have been cheating, but that's how bad I didn't want to go to the hospital.) I couldn't sleep out of worry and woke up every hour throughout the night to take his temperature. If he had a fever, I would take it again and wait a few more minutes and take it again until I felt justified in going back to sleep. I sound like an awful, selfish mother, but I must add that we had a clinic visit to see the doctor and have blood drawn in the morning. I really wasn't that negligent. It's kind of like waiting for the contractions to really get going.
We showed up to the clinic visit fully packed to be admitted. I was honest about my night's activities with the thermometer so they drew blood for blood cultures (infection). His ANC was 0 (no immune system) and because he had a fever during the night, we are now sitting on the sixth floor of the hospital for at least the next 48 hours. The tender mercy here is that we finally have a private room. I really needed that for my own sanity. (see the stress post that Lisa trumped!) :)
Thankfully, my sister, Angela, is here so I had the kids covered without any effort. The main logic and purpose of her visit this week was to help with unexpected hospital stays. Do I say I'm glad we didn't disappoint? She's been fantastic with the school drop offs and pick ups and bedtimes and meals and endless entertainment. I am truly blessed to have such an amazing, supportive family. And having 7 siblings has it perks in times like these!
Wednesday, August 18, 2010
Help is on the Way!
Friend Lisa here. I am finally putting out the call for help. So many have done so much already and now we will try to organize the troops.
As you can gather from Julie's last post, it's time to lighten her load (and Ryan's load! although I do transportation not water, sorry Ryan). Here is a clip from a letter I sent out to friends at school:
William will have more difficult chemotherapy next month followed by major surgery followed by a stem cell transplant. So I think it is time to get down to business and start a better coordinated effort of helping. If you are interested and willing to help with gardening, errands, grocery shopping and meals, meals, and meals, please follow the link and register your email and name. I think there is also a way to add notes (or you can send me a message) if you have any ideas of ways to help (like you LOVE to work on sprinklers). If you can bring 1 meal- that is a huge help.
Here's the link:
https://www.lotsahelpinghands.com/c/627356/
Thanks everyone!
And a note to my friend- Your "fight" was in the wrong place for today, perhaps; but your heart was in the right place, as always.
As you can gather from Julie's last post, it's time to lighten her load (and Ryan's load! although I do transportation not water, sorry Ryan). Here is a clip from a letter I sent out to friends at school:
William will have more difficult chemotherapy next month followed by major surgery followed by a stem cell transplant. So I think it is time to get down to business and start a better coordinated effort of helping. If you are interested and willing to help with gardening, errands, grocery shopping and meals, meals, and meals, please follow the link and register your email and name. I think there is also a way to add notes (or you can send me a message) if you have any ideas of ways to help (like you LOVE to work on sprinklers). If you can bring 1 meal- that is a huge help.
Here's the link:
https://www.lotsahelpinghands.com/c/627356/
Thanks everyone!
And a note to my friend- Your "fight" was in the wrong place for today, perhaps; but your heart was in the right place, as always.
Stress cycles
The past few days are on my list of days I am glad I won't have to repeat. Nothing specifically awful happened, but it feels more like the combination of many stresses and emotions all piling up on each other. I'm waiting for that big cry that finally bursts out and makes everything feel okay, more or less. I have moments when the tears start to surface, but the timing isn't quite right, so I hold them back and move on.
Yesterday I bought William a new DS carrying case to hold all his games because I was tired of them being in a plastic bag and having to carry them in my purse. With a new case, he would be in charge of storing and transporting. William was thrilled until he realized it was a case for a DSi and he has a DS lite. The two charging mechanism are not compatible. Who knew? Not me. Why, Nintendo? Why? So I returned it last night to Target. However, when I got home, I saw his games on the counter and many were missing. William had started to put them in the case and I had just returned the case with 6-8 games inside. They were not cheap games! I panicked. I called the store. They were closed. I showed up this morning and waited outside for them to open. I entered and asked at the service desk and checked on the floor with no luck. I asked an employee for help without giving any details, just that I had returned it with games. It turned out that one of the women helping me was the mother of one of William's friends and knew I was William's mother. She was amazing and sent many people on high alert looking all over the store for the case. A HUGE THANK YOU to Bea for helping to find the games!!
Thanks for all the comments and emails regarding the school situation. I had a good reality check with Lisa this morning (after my over stressed DS search) and today I have realized that William's schedule is so unpredictable right now that it's not even worth my time trying to fight as hard as I thought I should yesterday. He has two chemo cycles and surgery in September and 2 clinic visits each week and several appts. for a new round of tests and scans to prepare for surgery. Then he'll be in S. F. for a month. So for now I'm going to fight the fights that matter today and worry about tomorrow tomorrow. And when he's finally back home with only radiation to deal with, we'll move forward on the school route. We'll take any slots that fit with our schedule for now and worry about how many hours we are receiving later.
It's wonderful having all the boys back, but it's hard at the same time to suddenly toss 4 lives into my already precarious juggling act. When William was admitted for chemo last week, as is standard protocol, I was asked the date of his last bowel movement. I usually can rattle off exactly when it was and all the necessary descriptions of it. When I was asked this time, I thought, "Hmmm, I know I've seen a lot the past few day, but whose was it?"
I feel like I've been thrown in the boiling pot with all the new schedules. I have two different school schedules at the elementary school, one school schedule at home, another school schedule to start in September, 2 soccer schedules (thank goodness twins consolidate some things), clinic visit schedules, medicine schedules, chemo schedules, and any of those that involve William mean that the schedules have very little consistency from day to day or week to week. And somewhere in those daily schedules I must fit in meals, laundry, cleaning, bathing (although daily is extremely optional!), errands, a husband, bills.... And I blog. And I'm only getting to it right now because I have 5 hours to sit in this hospital room while William gets a blood transfusion as I type.
I've mentioned before that I love Sundays. I really do. I get a spiritual boost and strengthen my perspective on life and my purpose in it, but it doesn't mean that I don't think Sundays are stressful and sometimes full of unpleasant moments.
The past Sunday. Ryan and William stayed home since we worry about his susceptibility to infection. I got the boys piled in the car, to church, and filing in the chapel just as the meeting was supposed to start. The only catch was that we had to file up to the front of the room and up onto the podium and make our way into the choir seats because I am the music chorister for the month of August. We sat down, I gave a quick, unproductive, and ignored speech about reverence and then hurried to find the page of the first hymn and stood up to lead the first song. It was good. One of my favorites, "Count Your Many Blessings." It's upbeat and it's message is always a good one. But it's not good when four of my little blessings are wrestling and whistling and giggling to the point that I have to reach back and grab an arm while still waving my other hand for the music. I tried to remain calm, but the sweat had started. After the hymn, I had a brief rest between songs to restore peace and order. Then I had to lead the sacrament hymn which is of a reverent nature to help prepare to partake of the bread and water. The boys were still very disruptive and just as the hymn ended and the prayer was about to start, Clark hit his head on an arm rest and burst into tears. I grabbed his arm to hurry him out, but he held on to the chair thinking I was yanking him to take him out to be disciplined. So I quickly sat back down, whipped him onto my lap, and tried to stifle his cries in my shoulder. And I wasn't wearing a skirt appropriate to have boys climbing all over my lap! Disaster averted. I was able to redo the seating arrangement to reduce mayhem.
The speakers began their talks. The theme of all the talks: trial and adversity. Seemingly appropriate, right? I wanted to listen and glean some words of wisdom and counsel, but Cameron's ball point pen exploded all over his hand and pants. So we hurried out. And evidently the other boys followed a few minutes later because I found them in the boys bathroom playing around when I exited the girls bathroom with Cameron. All 5 of us made our way back up the podium to wait for the closing song. Soren passed the last few minutes running back and forth across the width of the last row of choir seats. I gave up. At least he was doing it quietly. Then came the closing song, a beautiful hymn and another favorite, but I wasn't prepared for the power of the words, "Where Can I Turn for Peace?". I lost it. I coudn't sing. My eyes filled with tears and I couldn't even mouth the words. I had to hold back the sobs and keep waving my arm. The words were touching and perhaps what I really needed to hear that day. And today too!
Here's a clip of The Mormon Tabernacle Choir singing it.
Where can I turn for peace?
Where is my solace
When other sources cease
to make me whole?
When with a wounded heart,
anger, or malice,
I draw myself a part,
searching my soul?
Where, when my aching grows,
Where, when I languish,
Where, in my need to know,
where can I run?
Where is the quiet hand
to calm my anguish?
Who, who can understand?
He, only One.
He answers privately,
Reaches my reaching
In my Gethsemane
Savior and Friend.
Gentle the peace he finds
for my beseeching.
Constant he is and kind,
Love without end.
---Emma Lou Thayne
So I'm going to count my blessings, take deep breaths, attempt to reduce some stress, restore some eternal perspective and find a little happy pill! (That'll be a post for tomorrow!)
Yesterday I bought William a new DS carrying case to hold all his games because I was tired of them being in a plastic bag and having to carry them in my purse. With a new case, he would be in charge of storing and transporting. William was thrilled until he realized it was a case for a DSi and he has a DS lite. The two charging mechanism are not compatible. Who knew? Not me. Why, Nintendo? Why? So I returned it last night to Target. However, when I got home, I saw his games on the counter and many were missing. William had started to put them in the case and I had just returned the case with 6-8 games inside. They were not cheap games! I panicked. I called the store. They were closed. I showed up this morning and waited outside for them to open. I entered and asked at the service desk and checked on the floor with no luck. I asked an employee for help without giving any details, just that I had returned it with games. It turned out that one of the women helping me was the mother of one of William's friends and knew I was William's mother. She was amazing and sent many people on high alert looking all over the store for the case. A HUGE THANK YOU to Bea for helping to find the games!!
Thanks for all the comments and emails regarding the school situation. I had a good reality check with Lisa this morning (after my over stressed DS search) and today I have realized that William's schedule is so unpredictable right now that it's not even worth my time trying to fight as hard as I thought I should yesterday. He has two chemo cycles and surgery in September and 2 clinic visits each week and several appts. for a new round of tests and scans to prepare for surgery. Then he'll be in S. F. for a month. So for now I'm going to fight the fights that matter today and worry about tomorrow tomorrow. And when he's finally back home with only radiation to deal with, we'll move forward on the school route. We'll take any slots that fit with our schedule for now and worry about how many hours we are receiving later.
It's wonderful having all the boys back, but it's hard at the same time to suddenly toss 4 lives into my already precarious juggling act. When William was admitted for chemo last week, as is standard protocol, I was asked the date of his last bowel movement. I usually can rattle off exactly when it was and all the necessary descriptions of it. When I was asked this time, I thought, "Hmmm, I know I've seen a lot the past few day, but whose was it?"
I feel like I've been thrown in the boiling pot with all the new schedules. I have two different school schedules at the elementary school, one school schedule at home, another school schedule to start in September, 2 soccer schedules (thank goodness twins consolidate some things), clinic visit schedules, medicine schedules, chemo schedules, and any of those that involve William mean that the schedules have very little consistency from day to day or week to week. And somewhere in those daily schedules I must fit in meals, laundry, cleaning, bathing (although daily is extremely optional!), errands, a husband, bills.... And I blog. And I'm only getting to it right now because I have 5 hours to sit in this hospital room while William gets a blood transfusion as I type.
I've mentioned before that I love Sundays. I really do. I get a spiritual boost and strengthen my perspective on life and my purpose in it, but it doesn't mean that I don't think Sundays are stressful and sometimes full of unpleasant moments.
The past Sunday. Ryan and William stayed home since we worry about his susceptibility to infection. I got the boys piled in the car, to church, and filing in the chapel just as the meeting was supposed to start. The only catch was that we had to file up to the front of the room and up onto the podium and make our way into the choir seats because I am the music chorister for the month of August. We sat down, I gave a quick, unproductive, and ignored speech about reverence and then hurried to find the page of the first hymn and stood up to lead the first song. It was good. One of my favorites, "Count Your Many Blessings." It's upbeat and it's message is always a good one. But it's not good when four of my little blessings are wrestling and whistling and giggling to the point that I have to reach back and grab an arm while still waving my other hand for the music. I tried to remain calm, but the sweat had started. After the hymn, I had a brief rest between songs to restore peace and order. Then I had to lead the sacrament hymn which is of a reverent nature to help prepare to partake of the bread and water. The boys were still very disruptive and just as the hymn ended and the prayer was about to start, Clark hit his head on an arm rest and burst into tears. I grabbed his arm to hurry him out, but he held on to the chair thinking I was yanking him to take him out to be disciplined. So I quickly sat back down, whipped him onto my lap, and tried to stifle his cries in my shoulder. And I wasn't wearing a skirt appropriate to have boys climbing all over my lap! Disaster averted. I was able to redo the seating arrangement to reduce mayhem.
The speakers began their talks. The theme of all the talks: trial and adversity. Seemingly appropriate, right? I wanted to listen and glean some words of wisdom and counsel, but Cameron's ball point pen exploded all over his hand and pants. So we hurried out. And evidently the other boys followed a few minutes later because I found them in the boys bathroom playing around when I exited the girls bathroom with Cameron. All 5 of us made our way back up the podium to wait for the closing song. Soren passed the last few minutes running back and forth across the width of the last row of choir seats. I gave up. At least he was doing it quietly. Then came the closing song, a beautiful hymn and another favorite, but I wasn't prepared for the power of the words, "Where Can I Turn for Peace?". I lost it. I coudn't sing. My eyes filled with tears and I couldn't even mouth the words. I had to hold back the sobs and keep waving my arm. The words were touching and perhaps what I really needed to hear that day. And today too!
Here's a clip of The Mormon Tabernacle Choir singing it.
Where can I turn for peace?
Where is my solace
When other sources cease
to make me whole?
When with a wounded heart,
anger, or malice,
I draw myself a part,
searching my soul?
Where, when my aching grows,
Where, when I languish,
Where, in my need to know,
where can I run?
Where is the quiet hand
to calm my anguish?
Who, who can understand?
He, only One.
He answers privately,
Reaches my reaching
In my Gethsemane
Savior and Friend.
Gentle the peace he finds
for my beseeching.
Constant he is and kind,
Love without end.
---Emma Lou Thayne
So I'm going to count my blessings, take deep breaths, attempt to reduce some stress, restore some eternal perspective and find a little happy pill! (That'll be a post for tomorrow!)
Tuesday, August 17, 2010
Waiting for Routines
Whatever happened to wake up, eat, send kids off to school, clean the house, eat, run some errands, pick up kids, homework/practices, eat, read books, go to bed and repeat over and over again? I am anxious to settle into some sense of routine. I think I'll be waiting a while.
I met with the school district today and I was reminded again that I will always be my child's number one advocate and the process will take some careful navigation and straight forward communication. I am glad to know I have some people on my side willing to help if needed. I will remain optimistic that my concerns will be resolved, but am also doing plenty of research on California education codes/laws. I'm grateful for my education and parents who have always done all they could for us in order to provide their children the best education they could.
William looks good. However, according to his blood work today, his hemoglobin counts are low and he is in need of a blood transfusion. Hemoglobin helps transport oxygen to the body and low counts can make you feel tired. William's not jumping on the bed, but he's not lying in it either. He is happy and perky and if you get him started talking about video games, I hope you have a lot of time to sit and listen! Since his counts just barely meet the parameters for transfusion, we were allowed to go home tonight without the blood, but we'll be back tomorrow for the 3+ hour transfusion. Hopefully this will be the extent of this weeks hospital stays and the extra blood with help him ward off any infections as he dips toward neutropenia. He's not quite there yet. His next appt. is on Friday.
I met with the school district today and I was reminded again that I will always be my child's number one advocate and the process will take some careful navigation and straight forward communication. I am glad to know I have some people on my side willing to help if needed. I will remain optimistic that my concerns will be resolved, but am also doing plenty of research on California education codes/laws. I'm grateful for my education and parents who have always done all they could for us in order to provide their children the best education they could.
William looks good. However, according to his blood work today, his hemoglobin counts are low and he is in need of a blood transfusion. Hemoglobin helps transport oxygen to the body and low counts can make you feel tired. William's not jumping on the bed, but he's not lying in it either. He is happy and perky and if you get him started talking about video games, I hope you have a lot of time to sit and listen! Since his counts just barely meet the parameters for transfusion, we were allowed to go home tonight without the blood, but we'll be back tomorrow for the 3+ hour transfusion. Hopefully this will be the extent of this weeks hospital stays and the extra blood with help him ward off any infections as he dips toward neutropenia. He's not quite there yet. His next appt. is on Friday.
Monday, August 16, 2010
Tired: What's New?
I've composed some drafts, written lists of things I want to blog about, but I'm tired. Again.
I just picked up my sister, Angela, from the airport. She's here to help in case we land back in the hospital again this week. Because that's William's trend. I'm meeting with the school district tomorrow for his medical independent study program and am prepared to insure I am provided what the law provides, but the reputation of our district in this department is less than stellar. Wish me luck.
William has a clinic visit tomorrow so we'll see if he's neutropenic yet. (William's doing well otherwise: nausea under control, bone pain starting, but also being controlled.)
I just picked up my sister, Angela, from the airport. She's here to help in case we land back in the hospital again this week. Because that's William's trend. I'm meeting with the school district tomorrow for his medical independent study program and am prepared to insure I am provided what the law provides, but the reputation of our district in this department is less than stellar. Wish me luck.
William has a clinic visit tomorrow so we'll see if he's neutropenic yet. (William's doing well otherwise: nausea under control, bone pain starting, but also being controlled.)
Thursday, August 12, 2010
William: Posting from Home
(some typed by William, the rest was dictated by him)
I came home today at 11:45 AM.
Soren beat Cameron and Clark three times in a row at Mario and Sonic at the Olympic Winter
games today. I had a playdate with Sam also. Me and Sam were playing the Wii and Daddy had
promised Cameron that he would play the Wii with him so we let them play. Sam and I tried to play Legos, but decided to go outside. Then we went inside and played some Wii. Then we took Sam home. I liked playing with Sam.
We had quiche for dinner, but I didn't feel like that so Daddy cooked me some macaroni and cheese. When I was halfway done, James and Cole came over and surprised me with cookies from James' grandma. She is one good cook. I ate 2 cookies. Cole, James, and I played Wii with our shirts off! I also got to play Angry Birds on Lisa's iphone. It is really fun!
Last night I ate an In 'N Out burger and animal style fries with my uncle, Matt, at the hospital. Uncle Matt brought it to me because I don't like the hospital food and my mommy keeps making me eat. We played Mario Kart on the DS and we unlock courses and cars.
Uncle Matt and Aunt Natalie left today and I'm a little sad that I didn't get to say goodbye because I was still at the hospital until lunch time. Aunt Angela will come on Monday night.
Grandpa Chad and Grandma Maidy
(Ryan's parents)
First time having energy to ride my bike last week
Being silly with Uncle Matt in their Utah Jazz hats
The dogs, Greta and Hazel, came to visit me. This is me with Hazel just hanging out.
All my brothers and Aunt Natalie and Uncle Matt came to visit. It was loud!
I came home today at 11:45 AM.
Soren beat Cameron and Clark three times in a row at Mario and Sonic at the Olympic Winter
games today. I had a playdate with Sam also. Me and Sam were playing the Wii and Daddy had
promised Cameron that he would play the Wii with him so we let them play. Sam and I tried to play Legos, but decided to go outside. Then we went inside and played some Wii. Then we took Sam home. I liked playing with Sam.
We had quiche for dinner, but I didn't feel like that so Daddy cooked me some macaroni and cheese. When I was halfway done, James and Cole came over and surprised me with cookies from James' grandma. She is one good cook. I ate 2 cookies. Cole, James, and I played Wii with our shirts off! I also got to play Angry Birds on Lisa's iphone. It is really fun!
Last night I ate an In 'N Out burger and animal style fries with my uncle, Matt, at the hospital. Uncle Matt brought it to me because I don't like the hospital food and my mommy keeps making me eat. We played Mario Kart on the DS and we unlock courses and cars.
Uncle Matt and Aunt Natalie left today and I'm a little sad that I didn't get to say goodbye because I was still at the hospital until lunch time. Aunt Angela will come on Monday night.
Grandpa Chad and Grandma Maidy(Ryan's parents)
First time having energy to ride my bike last week
Being silly with Uncle Matt in their Utah Jazz hats
The dogs, Greta and Hazel, came to visit me. This is me with Hazel just hanging out.
All my brothers and Aunt Natalie and Uncle Matt came to visit. It was loud!
Grandpa and Grandma Bennion stopped by to visit. I'm also wearing my new Star Wars: The Clone Wars pjs.
Play Wii Cole and James.
Play Wii Cole and James.The Crazies
CRaZy! is what William's hospital room is like when his four brothers, aunt, and uncle come for a visit. Let's just say that today the hospital has 5 fewer chocolate milks and 5 fewer Sprites. Oh, and a few less boxed OJs too! They don't know about the freezer stocked with ice cream cups and popsicles. Thankfully we didn't have a roommate at the time because it was loud and we filled that side of the room with folding chairs! It was good to have them all together and to be able to share in some of the hospital life. I want them to be able to have something to relate to when we tell them we are at the hospital.
William woke up this morning quite nauseated again and vomiting. I don't understand why, but evidently he was on a single, large dose of Zofran (for nausea) a day. He's always had continuous doses and that's what I thought he was getting, but evidently I missed that one this time. It won't happen again. The doctor switched his dosing to be continuous so we could stay ahead of the nausea instead of chasing it. Life improved after that, but eating and drinking is still a challenge. His Cytoxin (chemo drug) is very hard on the bladder and today urination has been very painful. His I.V. hydration was increased to try to flush it from his system more rapidly, but then hydration had to be decreased to avoid over hydration. He is done with the infusions of the Cytoxin so hopefully things will improve with time.
Today I also had a "Mommy moment", but not the kind you probably think I had. William K. was discharged yesterday and this morning we got a new roommate. He is 9 or 10 and has a blood disorder, Aplastic anemia, which means his stem cells don't produce enough blood cells. I'm learning more about it as this is the second roommate we have met with the same disease. It is very serious and deadly if not treated and treating it can also be difficult. You can google it if you want to know more.
He was in the clinic this morning for a check up, but due to unexplained and worsening pain, he was admitted for observation, labs, and transfusions. After determining he would be staying overnight and his pain was under control for the moment, his mother left to go home and pack a suitcase. While she was gone he slept and the nurses checked on him often. I also checked on him and helped him with his lunch tray. Then he fell back asleep and I went back to sitting with William. Suddenly and quietly, he awoke and without saying anything to us, had the maturity and presence of mind to push his nurse call button and tell the nurse he felt numbness. Never a good sign, right?
We soon had several nurses coming in and out and examining him. Then a doctor arrived and he was taken for scans. He was asking for his mother and starting to cry. So was I. My heart was breaking for him and I imagined the fear he was probably experiencing (diagnosed one month ago). My heart was breaking for his mother who wasn't there to comfort her son. My mothering instinct kicked in and I just wanted to hold him, stroke his hair, and whisper comforting words in his ear. William was asleep through the whole ordeal. As they were wheeling his bed out, I pulled a nurse aside to make sure his mother had been called (duh, probably had been done long before) and asked if I was needed to go with him and hold his hand since my boy was sleeping. I probably sounded like some crazy mother and doing that would probably break all sorts of ridiculous HEPA rules. I was assured a nurse would always be with him, but that's never the same as a mother (even though the nurse is probably a mother too). I know, how is a stranger any different or better? It was a "mommy moment". I wanted to be his mommy figure when his mother was unable to, if just for a moment. It made me so grateful to be able to always have someone with William in case the unexpected ever happened.
He never came back. He was transferred to the PICU. When I asked about him, the nurse didn't know the scan results (or couldn't tell me due to privacy laws), but agreed when I asked if it was probably a bleed somewhere, likely in his brain.
I'm grateful for modern medicine and miracles. I grateful for healthy children too. I grateful for crazy days that remind me of the power of motherhood.
William woke up this morning quite nauseated again and vomiting. I don't understand why, but evidently he was on a single, large dose of Zofran (for nausea) a day. He's always had continuous doses and that's what I thought he was getting, but evidently I missed that one this time. It won't happen again. The doctor switched his dosing to be continuous so we could stay ahead of the nausea instead of chasing it. Life improved after that, but eating and drinking is still a challenge. His Cytoxin (chemo drug) is very hard on the bladder and today urination has been very painful. His I.V. hydration was increased to try to flush it from his system more rapidly, but then hydration had to be decreased to avoid over hydration. He is done with the infusions of the Cytoxin so hopefully things will improve with time.
Today I also had a "Mommy moment", but not the kind you probably think I had. William K. was discharged yesterday and this morning we got a new roommate. He is 9 or 10 and has a blood disorder, Aplastic anemia, which means his stem cells don't produce enough blood cells. I'm learning more about it as this is the second roommate we have met with the same disease. It is very serious and deadly if not treated and treating it can also be difficult. You can google it if you want to know more.
He was in the clinic this morning for a check up, but due to unexplained and worsening pain, he was admitted for observation, labs, and transfusions. After determining he would be staying overnight and his pain was under control for the moment, his mother left to go home and pack a suitcase. While she was gone he slept and the nurses checked on him often. I also checked on him and helped him with his lunch tray. Then he fell back asleep and I went back to sitting with William. Suddenly and quietly, he awoke and without saying anything to us, had the maturity and presence of mind to push his nurse call button and tell the nurse he felt numbness. Never a good sign, right?
We soon had several nurses coming in and out and examining him. Then a doctor arrived and he was taken for scans. He was asking for his mother and starting to cry. So was I. My heart was breaking for him and I imagined the fear he was probably experiencing (diagnosed one month ago). My heart was breaking for his mother who wasn't there to comfort her son. My mothering instinct kicked in and I just wanted to hold him, stroke his hair, and whisper comforting words in his ear. William was asleep through the whole ordeal. As they were wheeling his bed out, I pulled a nurse aside to make sure his mother had been called (duh, probably had been done long before) and asked if I was needed to go with him and hold his hand since my boy was sleeping. I probably sounded like some crazy mother and doing that would probably break all sorts of ridiculous HEPA rules. I was assured a nurse would always be with him, but that's never the same as a mother (even though the nurse is probably a mother too). I know, how is a stranger any different or better? It was a "mommy moment". I wanted to be his mommy figure when his mother was unable to, if just for a moment. It made me so grateful to be able to always have someone with William in case the unexpected ever happened.
He never came back. He was transferred to the PICU. When I asked about him, the nurse didn't know the scan results (or couldn't tell me due to privacy laws), but agreed when I asked if it was probably a bleed somewhere, likely in his brain.
I'm grateful for modern medicine and miracles. I grateful for healthy children too. I grateful for crazy days that remind me of the power of motherhood.
Cummulative Effects
One of the effects of chemotherapy is the more cycles administered the worse it can be. It can be increasingly nauseating, increasingly exhausting, and increasingly more difficult to recover in between cycles. Of course, I must add the ever present caveat: It is always different for each person. But in William's case, this effect is beginning to manifest itself.
The chemo began Tuesday night around 10 PM, so William slept through the first 10 hours. Sort of. We had brief awake moments every 2 hours to record outputs. When he woke up this morning, I looked at him and asked if he would like some breakfast. He quietly shook is head, paused, and had the glazed look in his eye that tells me he is trying to figure what isn't right. He seemed pale. I persisted and asked if he wanted juice or water because I feel helpless if I'm not trying to provide some sort of nutrition or comfort. Comfort was what was needed. He whispered he didn't feel well, I grabbed the pink bucket and voila! He vomited. He had nothing in his stomach so he kept gagging and gagging and gasping for air, tearing up, and whispering that he couldn't breathe. I felt helpless. I just sat there and stroked his arm and held the bucket, trying to whisper words of comfort. I have no idea what words can comfort that! The nurses warned us in the beginning that there would be times when he would be in pain and/or sick and we would feel helpless like this. It's rotten and it stinks and it's not fair. The chemo has just sucked the sparkle right out of him in a matter of hours.
Dr. Lee came by on rounds a while later and assured me that this is normal and expected for him at this stage and not to worry about making him eat or drink anything. He seriously said that to this Get-every-possible-calorie-down-him Mom. William is receiving I.V. fluids, but no nutrition because both ports are needed to administer the chemo. The nurses gave him Benedryl and Reglan in between Zofran and that helped him sleep all afternoon and through the nausea. My brother, Matt, relieved me at the hospital so I could be home to pick the boys up from school and go to soccer practices. This was a nice treat in our effort to keep life as normal as possible for the rest of the boys. We know this won't always be possible in the very near future, but we'll try as long as we can. Besides, Uncle Matt brings some sparkle back to William. He's the fun uncle (and single!) and William would much rather spend the afternoon and evening with him than me. (I'm completely un-offended.)
Matt, and my sister, Natalie, have been amazing. The boys have loved them and they have been completely capable. I love seeing my boys build such great relationships with their aunts and uncles!
Thanks for the responses to my Blogger issues. I'll try the quick fix tonight and the permanent fix tomorrow when I have the energy to think. Right now I'm going to try to savor the moments I have to sleep in my own bed. (Ryan's on hospital night duty tonight).
The chemo began Tuesday night around 10 PM, so William slept through the first 10 hours. Sort of. We had brief awake moments every 2 hours to record outputs. When he woke up this morning, I looked at him and asked if he would like some breakfast. He quietly shook is head, paused, and had the glazed look in his eye that tells me he is trying to figure what isn't right. He seemed pale. I persisted and asked if he wanted juice or water because I feel helpless if I'm not trying to provide some sort of nutrition or comfort. Comfort was what was needed. He whispered he didn't feel well, I grabbed the pink bucket and voila! He vomited. He had nothing in his stomach so he kept gagging and gagging and gasping for air, tearing up, and whispering that he couldn't breathe. I felt helpless. I just sat there and stroked his arm and held the bucket, trying to whisper words of comfort. I have no idea what words can comfort that! The nurses warned us in the beginning that there would be times when he would be in pain and/or sick and we would feel helpless like this. It's rotten and it stinks and it's not fair. The chemo has just sucked the sparkle right out of him in a matter of hours.
Dr. Lee came by on rounds a while later and assured me that this is normal and expected for him at this stage and not to worry about making him eat or drink anything. He seriously said that to this Get-every-possible-calorie-down-him Mom. William is receiving I.V. fluids, but no nutrition because both ports are needed to administer the chemo. The nurses gave him Benedryl and Reglan in between Zofran and that helped him sleep all afternoon and through the nausea. My brother, Matt, relieved me at the hospital so I could be home to pick the boys up from school and go to soccer practices. This was a nice treat in our effort to keep life as normal as possible for the rest of the boys. We know this won't always be possible in the very near future, but we'll try as long as we can. Besides, Uncle Matt brings some sparkle back to William. He's the fun uncle (and single!) and William would much rather spend the afternoon and evening with him than me. (I'm completely un-offended.)
Matt, and my sister, Natalie, have been amazing. The boys have loved them and they have been completely capable. I love seeing my boys build such great relationships with their aunts and uncles!
Thanks for the responses to my Blogger issues. I'll try the quick fix tonight and the permanent fix tomorrow when I have the energy to think. Right now I'm going to try to savor the moments I have to sleep in my own bed. (Ryan's on hospital night duty tonight).
Tuesday, August 10, 2010
Ramblings
The chemo is hung from the I.V. pole with care,
In hopes that the nausea in not too hard to bear.
That's all I've got 'cause it's getting late and I'm going to have to abbreviate the past couple days.
We've had a great week and now we're back in the hospital until Saturday morning (hopefully). We reached another milestone too. William managed to stay out of the hospital in between chemo cycles due to unexpected fevers or adverse chemo side effects. The bone marrow harvest did land us in the hospital, but that was planned so we're not counting that stay. Hooray!
We're roomies with William K. again. It is really great to see the boys get so excited to see each other and play like eight year olds. The two boys spent an hour in the hallway playing with airplanes: paper and the styrofoam/cardboard-ish ones from the hobby store. One of our favorite nurses, Lynn, also came and joined in the giggles and fun. It was funny to watch the boys pull their I.V. poles around, but also sobering because they couldn't run after the airplanes and they were stuck throwing them in a short narrow hallway with a low ceiling. Boys and airplanes need wide open spaces. I took pictures and video. Maybe I'll post them one day.
William took missing school all in stride. He is sad not to be in class with his friends and he is sad he doesn't get to walk or ride his bike to school all by himself. On the bright side, he said, "This means I get a longer summer vacation!" Yes, that's one way of looking at it. Ah, to have the perspective of a child.
Last night William received a homemade, wooden, Harry Potter wand that a friend's grandpa made for him! It is awesome! He has spent the day practicing his spells and the art of the hand/arm movements. It is hilarious to listen to him explain the various nuances with each spell. He even came up with his own, very appropriate spell, "Tumoro disappearo!" Ah, to have the imagination of a child.
I have a pet peeve with Blogger. When a blog is posted, it posts with the time I started to write and not the time I actually published. I know, what a ridiculous pet peeve, right? I've actually cut and pasted my entire entry into a new window just before publishing, just to get the time stamp at completion. The time stamp says a lot about my day. Most blogs are actually published near the midnight hour because that's when I actually get around to breathing and processing, but I jot notes during the day if I can. Some of you have figured out my pattern and others are just confused why the time stamp says 7:00 PM, but there was no post when they checked at 10:00 PM. Tonight I'm signing out with the time I finished. If anyone can remedy my pet peeve, feel free to share the knowledge. Otherwise, I'm signing out because I have to collect urine samples every 2 hours throughout the night. It's 11:10 PM. Goodnight.
In hopes that the nausea in not too hard to bear.
That's all I've got 'cause it's getting late and I'm going to have to abbreviate the past couple days.
We've had a great week and now we're back in the hospital until Saturday morning (hopefully). We reached another milestone too. William managed to stay out of the hospital in between chemo cycles due to unexpected fevers or adverse chemo side effects. The bone marrow harvest did land us in the hospital, but that was planned so we're not counting that stay. Hooray!
We're roomies with William K. again. It is really great to see the boys get so excited to see each other and play like eight year olds. The two boys spent an hour in the hallway playing with airplanes: paper and the styrofoam/cardboard-ish ones from the hobby store. One of our favorite nurses, Lynn, also came and joined in the giggles and fun. It was funny to watch the boys pull their I.V. poles around, but also sobering because they couldn't run after the airplanes and they were stuck throwing them in a short narrow hallway with a low ceiling. Boys and airplanes need wide open spaces. I took pictures and video. Maybe I'll post them one day.
William took missing school all in stride. He is sad not to be in class with his friends and he is sad he doesn't get to walk or ride his bike to school all by himself. On the bright side, he said, "This means I get a longer summer vacation!" Yes, that's one way of looking at it. Ah, to have the perspective of a child.
Last night William received a homemade, wooden, Harry Potter wand that a friend's grandpa made for him! It is awesome! He has spent the day practicing his spells and the art of the hand/arm movements. It is hilarious to listen to him explain the various nuances with each spell. He even came up with his own, very appropriate spell, "Tumoro disappearo!" Ah, to have the imagination of a child.
I have a pet peeve with Blogger. When a blog is posted, it posts with the time I started to write and not the time I actually published. I know, what a ridiculous pet peeve, right? I've actually cut and pasted my entire entry into a new window just before publishing, just to get the time stamp at completion. The time stamp says a lot about my day. Most blogs are actually published near the midnight hour because that's when I actually get around to breathing and processing, but I jot notes during the day if I can. Some of you have figured out my pattern and others are just confused why the time stamp says 7:00 PM, but there was no post when they checked at 10:00 PM. Tonight I'm signing out with the time I finished. If anyone can remedy my pet peeve, feel free to share the knowledge. Otherwise, I'm signing out because I have to collect urine samples every 2 hours throughout the night. It's 11:10 PM. Goodnight.
Monday, August 9, 2010
Back to School
Hi all. Friend Lisa here tonight. Crazy as it may sound, today, August 9th, was our first day back to school. A day of celebration for parents! A day different than all other school days for us- William and James, for the first time, won't be in class together. They have been in class (and Julie and I have been on the phone checking on assignments and field trip dates) since the beginning.
Here is kindergarten:
First Grade (William in front, James in back in the yellow, Mrs. Wilson next to Ryan)
And second grade:
And today we started third grade-
William understands that this is what needs to be done right now and he is resilient and happy. I can see it in the photo of him and James and I hope you can too- I can see the sparkle. He is just looking like himself.
So we will visit next week and pretend you want to see us, Will. We'll bring the good stuff.
Here is kindergarten:
First Grade (William in front, James in back in the yellow, Mrs. Wilson next to Ryan)And second grade: And today we started third grade-William understands that this is what needs to be done right now and he is resilient and happy. I can see it in the photo of him and James and I hope you can too- I can see the sparkle. He is just looking like himself.So this is not my plan for the year but this is the plan and we are going with it. James counted the students in his class and he has determined there is room for William. He hears us say Will is half-way done with Chemo and he knows this started at the end of May so he is calendaring his return to school. We respect (and love) a scheduler but we know there are things to accomplish before Will comes back to school so we will hope and pray and wait. Happy 1st day of third grade, whether at the elementary school or school delivered to your door!
And hey, look who I found at school this morning! Clark on his first day. Have a great year Clark, you have grown so much this summer (in many wonderful ways).
This photo makes me smile. Yes, all 8 of our kids on the trampoline. How awesome and loud and nerve-racking and sweaty and perfect is that? 
And here is Dan showing Will how to fire up Angry Birds on his iphone. Just call him "Dan the Media Drug Dealer". Will had so much fun that he would not give it up, had to pry it out of his hands with a promise to visit in the hospital with the iphone.
This photo makes me smile. Yes, all 8 of our kids on the trampoline. How awesome and loud and nerve-racking and sweaty and perfect is that? And here is Dan showing Will how to fire up Angry Birds on his iphone. Just call him "Dan the Media Drug Dealer". Will had so much fun that he would not give it up, had to pry it out of his hands with a promise to visit in the hospital with the iphone.So we will visit next week and pretend you want to see us, Will. We'll bring the good stuff.
Sunday, August 8, 2010
Families Rock
I love Sundays because we are all together as a family and we focus on the things that really matter in life.
The past two days have been great as a family. On Saturday, we hiked a bit along the river and under the bridge, went out to eat for pizza, walked to an ice cream parlor and sat out side licking ice cream cones. We said goodbye to Ryan's parents with lots of grateful hugs and welcomed my brother and sister and had a quick visit from my parents as well. It was a busy day, but we created great memories.
Today we all went to church together. We haven't done that since May. And as exhausting as church can sometimes be with wiggly little boys, I loved it! I feel rejuvenated by attending church in ways a good night sleep doesn't provide. I have renewed hope and faith and understanding about the purpose of this life and my role as a wife, mother, daughter, sister, woman, friend.
William is doing fantastic! His energy level is great. He tires easily, but I know that because he is trying to be active! He is perky and his eyes have a sparkle that has been missing for quite some time. My friend, Lisa, commented tonight that he was probably slowly starving himself. I think she is right. He has been so much better since he started the I.V. nutrition. And the transfusion of 3 different blood products last weekend probably helped a bit too. (I totally understand the benefit of blood doping in athletes.)
School starts tomorrow and William is a little sad not to be going with all his friends, but James is coming over to get the annual first day of school picture together. They've been in the same class since Kindergarten. I'm grateful William's start of chemo was pushed back a day so that I can make tomorrow more about my other children and the milestones in their lives. One starts 1st grade and my twins start Kindergarten. They are all so excited! I am too! I'm just dreading having to make lunches again every day.
I am more grateful for everyday I have with my my family, both immediate and extended. I take more time to hug my children and tell them they are loved. I'm not even close to perfect and I still lack patience at times, but Ryan and I both feel the refining that is occuring in certain areas of our lives. Ryan and I are so blessed to have such wonderful, loving, and supportive parents and siblings. Our families have lightened our load in so many ways and brought so many smiles on hard-to-smile days. Despite some of the long physical distances between us, we love you and are grateful for you in our lives!
The past two days have been great as a family. On Saturday, we hiked a bit along the river and under the bridge, went out to eat for pizza, walked to an ice cream parlor and sat out side licking ice cream cones. We said goodbye to Ryan's parents with lots of grateful hugs and welcomed my brother and sister and had a quick visit from my parents as well. It was a busy day, but we created great memories.
Today we all went to church together. We haven't done that since May. And as exhausting as church can sometimes be with wiggly little boys, I loved it! I feel rejuvenated by attending church in ways a good night sleep doesn't provide. I have renewed hope and faith and understanding about the purpose of this life and my role as a wife, mother, daughter, sister, woman, friend.
William is doing fantastic! His energy level is great. He tires easily, but I know that because he is trying to be active! He is perky and his eyes have a sparkle that has been missing for quite some time. My friend, Lisa, commented tonight that he was probably slowly starving himself. I think she is right. He has been so much better since he started the I.V. nutrition. And the transfusion of 3 different blood products last weekend probably helped a bit too. (I totally understand the benefit of blood doping in athletes.)
School starts tomorrow and William is a little sad not to be going with all his friends, but James is coming over to get the annual first day of school picture together. They've been in the same class since Kindergarten. I'm grateful William's start of chemo was pushed back a day so that I can make tomorrow more about my other children and the milestones in their lives. One starts 1st grade and my twins start Kindergarten. They are all so excited! I am too! I'm just dreading having to make lunches again every day.
I am more grateful for everyday I have with my my family, both immediate and extended. I take more time to hug my children and tell them they are loved. I'm not even close to perfect and I still lack patience at times, but Ryan and I both feel the refining that is occuring in certain areas of our lives. Ryan and I are so blessed to have such wonderful, loving, and supportive parents and siblings. Our families have lightened our load in so many ways and brought so many smiles on hard-to-smile days. Despite some of the long physical distances between us, we love you and are grateful for you in our lives!
Friday, August 6, 2010
Keeping Things in Check (more or less)
We had another clinic visit on Thursday and William's numbers are great. His ANC is high which means his immune system is in great shape at the moment and he can live a somewhat normal life for the next few days. His energy level continues to improve due to the I.V. nutrition and the mass of commotion that now fills the house, but I continue to worry because he is not consuming adequate amounts by mouth on his own to gain weight. I even wonder if he's eating enough to maintain his current weight. His sense of taste and smell have been altered from the chemo which makes him fairly picky, but sometimes I wonder if things really don't sound good to him or if he's just learned how to work the system (me)! So once again I walk the fine line of loving mom and tough mom and calling his bluff.
William is currently 26 kg/57.2 lbs. Dr. Yim wants to keep him on I.V. nutrition for a while because he wants William to be over 30 kg/66 lbs for the bone marrow transplant. That's a few pounds more than he had when we started this journey, but he needs the fat on his body in order to tolerate the high dose chemotherapy round that is administered just before the transplant.
Ryan had his not-so-annual physical exam yesterday and is physically healthy, but talked at length with the doctor about William and our family situation. He reminded us about the importance of sleep, a healthy diet, exercise, and continuing recreation (not putting off having fun as a family until life is less stressful). Good advice. We feel like we are doing well, but also need to improve in all areas. I improved my mood today with a long overdue haircut---nothing drastic like I typically do after growing it out this long since I still have many hospital stays ahead with reduced personal grooming standards. Gotta love a pony tail (or not)! Thanks, Emily! I love it!
We have enjoyed having Ryan's parents this week to lighten our load and ease the transition from vacation mode. Ryan's dad has been hard at work doing yard projects and Ryan's mom has kept the boys busy and entertained. Thank you! Thank you! We are so grateful for the enormous support from our families. My brother and sister will arrive tomorrow and spend the week helping us while William is in the hospital for chemo again. The following week another one of my sisters will fly out to help during the week William usually ends up in the hospital for an unscheduled stay. Our burdens are truly lightened by the many sacrifices so many have made to help us. A huge thank you to the many people who have worked in our yard, cleaned our home, washed our laundry, left food, flowers, cards, on our doorstep, etc. We are so grateful for the outpouring of love and continued thoughtful notions. I can't possibly keep up with thank you notes, but please know how much we appreciate everything and draw strength from all of you as well.
William is currently 26 kg/57.2 lbs. Dr. Yim wants to keep him on I.V. nutrition for a while because he wants William to be over 30 kg/66 lbs for the bone marrow transplant. That's a few pounds more than he had when we started this journey, but he needs the fat on his body in order to tolerate the high dose chemotherapy round that is administered just before the transplant.
Ryan had his not-so-annual physical exam yesterday and is physically healthy, but talked at length with the doctor about William and our family situation. He reminded us about the importance of sleep, a healthy diet, exercise, and continuing recreation (not putting off having fun as a family until life is less stressful). Good advice. We feel like we are doing well, but also need to improve in all areas. I improved my mood today with a long overdue haircut---nothing drastic like I typically do after growing it out this long since I still have many hospital stays ahead with reduced personal grooming standards. Gotta love a pony tail (or not)! Thanks, Emily! I love it!
We have enjoyed having Ryan's parents this week to lighten our load and ease the transition from vacation mode. Ryan's dad has been hard at work doing yard projects and Ryan's mom has kept the boys busy and entertained. Thank you! Thank you! We are so grateful for the enormous support from our families. My brother and sister will arrive tomorrow and spend the week helping us while William is in the hospital for chemo again. The following week another one of my sisters will fly out to help during the week William usually ends up in the hospital for an unscheduled stay. Our burdens are truly lightened by the many sacrifices so many have made to help us. A huge thank you to the many people who have worked in our yard, cleaned our home, washed our laundry, left food, flowers, cards, on our doorstep, etc. We are so grateful for the outpouring of love and continued thoughtful notions. I can't possibly keep up with thank you notes, but please know how much we appreciate everything and draw strength from all of you as well.
Wednesday, August 4, 2010
Picking Carrots for Special Visitors
One of the things I was looking forward to when my boys all arrived home was showing them what happened in our garden while they were gone. This is our first ever attempt at a garden and I'm a bit surprised anything has survived. One of the things I have been saving to harvest with the boys is the carrots. They helped to plant them and they love to eat them. William was excited to show his brothers the garden too. Tuesday morning, he slung his backpack containing his I.V. pumps and bags over his shoulder and headed outside to explore with his brothers. Notice the watermelon growing on a trellis between their two heads. (It's a bit like "I Spy...")
So we picked a lot of carrots, some were very large and some probably could have used another week or so, but pulling a surprise out of the ground is so much fun! William isn't actually supposed to play in the dirt and we must all be diligent about washing hands after being in the garden. So we bent the sanitary restrictions for a few minutes and made some great memories.
Another great memory came walking up our driveway. Our friends, Jared and Tiffiany Ellison, notified their friend, Eric Baade, a local Folsom police officer, about my plight with my windshield and needing to get a signature to verify I replaced it. Eric was recently part of the crew that traveled with the Ellisons and their 12 year old son, Connor, who were all members of Team Donate Life and competed in the grueling 3,000+ mile bicycle race, Race Across America, to promote organ donation. Connor is the youngest person to ever complete the race and has congenital hepatic fibrosis, a liver disease. The Ellisons posted a picture of William on their bikes to remind them of his fight with cancer while they rode. William followed them on their blog while in the hospital and watch the live tracker to know were they were each day. Eric had seen William's picture and was familiar with his story. He asked if he could come and do something a little special for William too. I thought, "Maybe a bunch of police cars and sirens and stickers? Or maybe they will handcuff my boys and stick them in the back of the patrol car? (no, I don't want them to think there is fun in that!)" It was way better and a little less disruptive to the neighborhood!
HORSES!
The boys were so excited and asked if they could feed them carrots!
That's not exactly what I had hoped would be the fate of our garden carrots,
but I let them feed them a few.
And my "fix it" ticket is all taken care of!
Thank you, Officers!
Thank you, Ellisons!
So we picked a lot of carrots, some were very large and some probably could have used another week or so, but pulling a surprise out of the ground is so much fun! William isn't actually supposed to play in the dirt and we must all be diligent about washing hands after being in the garden. So we bent the sanitary restrictions for a few minutes and made some great memories.Another great memory came walking up our driveway. Our friends, Jared and Tiffiany Ellison, notified their friend, Eric Baade, a local Folsom police officer, about my plight with my windshield and needing to get a signature to verify I replaced it. Eric was recently part of the crew that traveled with the Ellisons and their 12 year old son, Connor, who were all members of Team Donate Life and competed in the grueling 3,000+ mile bicycle race, Race Across America, to promote organ donation. Connor is the youngest person to ever complete the race and has congenital hepatic fibrosis, a liver disease. The Ellisons posted a picture of William on their bikes to remind them of his fight with cancer while they rode. William followed them on their blog while in the hospital and watch the live tracker to know were they were each day. Eric had seen William's picture and was familiar with his story. He asked if he could come and do something a little special for William too. I thought, "Maybe a bunch of police cars and sirens and stickers? Or maybe they will handcuff my boys and stick them in the back of the patrol car? (no, I don't want them to think there is fun in that!)" It was way better and a little less disruptive to the neighborhood!
HORSES!
The boys were so excited and asked if they could feed them carrots!That's not exactly what I had hoped would be the fate of our garden carrots,
but I let them feed them a few.
And my "fix it" ticket is all taken care of!Thank you, Officers!
Thank you, Ellisons!
Tuesday, August 3, 2010
Harvest: Success!
We're HOME! We made it home Monday night just before midnight. It is so great to be all together at home. The harvest was successful and now we can cross this step off our list and move forward. William had a rough time getting his femoral line out that night. The procedure itself went well, but William had a great deal of anxiety and it made the whole process take a long time. It took well over an hour just to get through it as we all were working on calming him down. Who can blame him? He's been through a lot and deserves to cry and scream sometimes. He had to lie flat for an hour afterward to make sure the bleeding was controlled. It was good to just have some quiet down time to hold each other and take a lot of deep breaths.
Today was a great day! The boys were all thrilled to be together. William's energy and appetite were fantastic. He's gained about 5 lbs since last Thursday! I'm a proud mother! He and Clark now weigh exactly the same! I'm glad William's not my child with the competitive drive like mine.
We had a fun surprise today too! We have some great pictures to post, but I'm so tired, I'm going to keep you guessing until tomorrow.
Today was a great day! The boys were all thrilled to be together. William's energy and appetite were fantastic. He's gained about 5 lbs since last Thursday! I'm a proud mother! He and Clark now weigh exactly the same! I'm glad William's not my child with the competitive drive like mine.
We had a fun surprise today too! We have some great pictures to post, but I'm so tired, I'm going to keep you guessing until tomorrow.
Monday, August 2, 2010
Pheresis
Please excuse the grainy pictures. I used my cell phone since the camera was with Dad at the beach with the rest of the crew. Hopefully I can post some better ones later with an old camera I brought if I can figure out how to get them off the camera.William is currently undergoing pheresis: a procedure in which the blood is filtered, separated, and a portion retained, with the remainder being returned to the individual. The stem cells are the portion that is being retained in William's case. His own stem cells will be frozen and saved for later for his stem cell transplant. Hopefully enough stem cells will be collected today so we don't have to stay here tonight and repeat the process tomorrow. We should have the stem cell count results back sometime later this afternoon. We are ever hopeful that his counts will be good enough to send us packing!
This morning he had a catheter placed in his groin. It looks very similar to his Broviac (dual port--blood out and blood in). It was a fairly uncomfortable procedure for him since the numbing shot was not completely effective and neither was the sedation medication. He talked through the whole thing and periodically winced and whined from the pain. However, once it was over and he was brought to the pheresis lab, he stayed awake long enough to order some Cocoa Puffs and then fall asleep before it arrived! He slept for 2 1/2 hours.
He is awake and in good spirits, but doesn't want to move for fear of pain in his leg. He just ordered his lunch over the phone all by himself. He loves doing that and actually looks forward to each meal for a change. This mean, yes, he is eating. We've paused his TPN treatment (I.V. nutrition) while we're here. He's gained a whopping 3 lbs. since he started TPN last Thursday night which translates to approximately 1 lb. per infusion. Yay! Yay! Yay!
All the brothers have returned home and we are anxious to all be together. However, we were even more anxious to get to San Francisco because we received word that Soren threw up in the car while traveling home and then Clark felt sick later that day. So while the sick germs settle and leave, we are grateful to be away so we don't have one more complication in this process.
Thank you for all the prayers and fasting in our behalf for the success of this stem cell harvest and just the fact that it happened. We are so relieved this milestone has been reached. William and I have called it the first Big Little Hump. We have a few more to climb and they are only getting bigger, but we've made it this far and we are so happy and relieved.
Sunday, August 1, 2010
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