We are home!!! Derek was discharged from the hospital today and got home around 4p.m. this afternoon. It surely is nice to all be together under one roof again! I am feeling just a little nervous, though, as there is a certain security about being in the hospital. But armed with seven different medications, a box of facemasks, and an appointment for Monday at the outpatient clinic, I think we will make it.
Derek's last bone marrow test from Friday came back negative, meaning that there are no immature white blood cells (blasts) being produced in the marrow. That is really fantastic news because when we came here, nearly 100% of the bone marrow was making these cells. Last week's test showed only 10%, and anything under 5% is considered in remission. So Derek is officially in remission!! Praise God! The fact that he achieved remission in two weeks is even better and gives him the best prognosis. We are so thankful for the progress he has made! His appetite was low over the weekend, but seemed to bounce back more quickly this week than last after his chemo treatment. As of today, he is eating nearly twice as much as I am. He has some catching up to do, though, and many more days of poor appetite ahead, so it's good he can eat for now.
Sunday, a host of kind-hearted people decended on our house and quickly moved everthing out of one half of the house and put it in the other. They ripped up the old flooring and began the task of replacing it with new hard flooring. By the end of the day, they had finished laying new flooring in Derek's room, Kristen's room, the kitchen, dining room, and half the living room. Monday they finished the living room and office while another crew of moms and kids helped move things back into place and clean the completed areas. Today, they finished the flooring in the master bedroom. All that is left is the trim. Our house is still pretty much a disaster - not what I wanted to bring Derek home to - but I think we will make it. We essentially moved out of our house, put down new flooring, and now have to move back in. The new floor looks great! A huge THANK YOU!! to all those who contributed to this project.
Friday, September 23, 2011
Derek’s energy and appetite returned full force on Wednesday. Yesterday, he was back to eating everything on his tray and enthusiastically went to the classroom and playroom again.
This morning, though, he had another bone marrow test for which he was sedated. After that, they administered his third round of chemo. I know the energy and appetite will not last long.
I started noticing the first loose hairs on Derek’s pillow on Wednesday and knew what was coming. Thursday there were more, and he told me he wanted a haircut. He said it was getting too long. He was due for a haircut, had we been home, but I knew the real reason it was bothering him: it is falling out. By this morning, running my fingers through his hair yielded even more. I decided we needed to give him a buzz, both for his comfort and so people can get used to seeing him with shorter hair before it is all gone. I usually cut his hair, but I have used scissors and not clippers. So I enlisted the help of a friend with vast experience; she has a husband and four boys.
Kristen wanted to be there to see it. This is traumatic for her, too. She doesn’t like what is happening to her brother.
Before they arrived, I washed Derek’s hair so we could take before and after pictures. I had to hold back the tears, knowing this was the last time I would wash his thick dark hair for a very long time. It is thinning so fast.
When our friend arrived, she brought a picture of her family, all with short buzz cuts, too. They wanted their hair to match Derek's.
These are the before and after pictures:
The nurse practitioner told us again that they would really like to send Derek home early next week – hopefully Monday.
Our new flooring was delivered to our house today (Friday), and I understand there is a crew set up to install it on Sunday. Thank you all for your help and support in this!
Tuesday, September 20, 2011
Derek did get a waffle this morning, but he ate it slowly this time. He has lost five pounds since we were admitted two weeks ago. Some of it, I’m sure, is the reduction in size of his enlarged liver and spleen and the mass in his chest, but he just has not been hungry.
Kristen has been spending some days with a close friend, and Monday was one of those days. She had a piano lesson, to which our friend took her. Kristen’s piano teacher has been so gracious and understanding of our whole situation. Kristen has not had practice times to prepare for her lessons because we are at the hospital so much of the time. Her teacher has offered to use the time to practice with Kristen just to keep her skills up until we are able to be back home on some sort of regular schedule.
Today there was a scheduled home school field trip to the L.A. Science Center, and our friends asked to take Kristen with them. I agreed, knowing that they would be vigilant to make sure she washed hands and used hand sanitizer regularly. They invited Kristen to stay overnight since they were leaving first thing in the morning for the field trip. Kristen was excited to stay. It was her very first night away from Mommy or Daddy.
With Kristen away and Vince at the hospital with Derek, I was at home Monday night without any of them. It was a very strange feeling.
This morning, our friends called us to say that Kristen had a stomach ache and had awakened very early. She wanted to come home instead of going on the field trip. I decided to bring her home after taking my mom to the hospital. A few minutes later, our friend called back to say that Kristen really did want to go on the field trip, but she wanted me to go with her. So, spur of the moment, I decided to go. If I had the day to spend with Kristen, it may as well be on the field trip.
I felt a bit awkward going out in public for the first time in two weeks. So much has happened over the last two weeks that I feel like a different person in some ways. Even though the other families going on the field trip were good friends, and all have provided support for us in many ways, I still felt a bit strange. And, as I looked at our friend’s son, with whom Derek plays so well, I couldn’t help but feel pangs of sadness; there should be two little brown-headed boys instead of just one. Overall, though, it was good to get out, spend the day with Kristen, and enjoy the company of friends.
When I returned to the hospital to spend the night this evening, Derek seemed to have much more energy. We had discovered that, from an 8th floor window, we could view helicopters landing and leaving the heliport above our unit. When we heard one land, Derek wanted to go up quickly to watch it. He put on a mask (he needs to wear one any time he leaves his room) and we headed for the elevator. We got to watch it take off, but while waiting for the down elevator, we heard another one approaching. We raced back to the window and were able to see it land and then take off a few minutes later. Derek was so excited. It was good to see him feeling a bit better after several days of very low energy.
Kristen has been spending some days with a close friend, and Monday was one of those days. She had a piano lesson, to which our friend took her. Kristen’s piano teacher has been so gracious and understanding of our whole situation. Kristen has not had practice times to prepare for her lessons because we are at the hospital so much of the time. Her teacher has offered to use the time to practice with Kristen just to keep her skills up until we are able to be back home on some sort of regular schedule.
Today there was a scheduled home school field trip to the L.A. Science Center, and our friends asked to take Kristen with them. I agreed, knowing that they would be vigilant to make sure she washed hands and used hand sanitizer regularly. They invited Kristen to stay overnight since they were leaving first thing in the morning for the field trip. Kristen was excited to stay. It was her very first night away from Mommy or Daddy.
With Kristen away and Vince at the hospital with Derek, I was at home Monday night without any of them. It was a very strange feeling.
This morning, our friends called us to say that Kristen had a stomach ache and had awakened very early. She wanted to come home instead of going on the field trip. I decided to bring her home after taking my mom to the hospital. A few minutes later, our friend called back to say that Kristen really did want to go on the field trip, but she wanted me to go with her. So, spur of the moment, I decided to go. If I had the day to spend with Kristen, it may as well be on the field trip.
I felt a bit awkward going out in public for the first time in two weeks. So much has happened over the last two weeks that I feel like a different person in some ways. Even though the other families going on the field trip were good friends, and all have provided support for us in many ways, I still felt a bit strange. And, as I looked at our friend’s son, with whom Derek plays so well, I couldn’t help but feel pangs of sadness; there should be two little brown-headed boys instead of just one. Overall, though, it was good to get out, spend the day with Kristen, and enjoy the company of friends.
When I returned to the hospital to spend the night this evening, Derek seemed to have much more energy. We had discovered that, from an 8th floor window, we could view helicopters landing and leaving the heliport above our unit. When we heard one land, Derek wanted to go up quickly to watch it. He put on a mask (he needs to wear one any time he leaves his room) and we headed for the elevator. We got to watch it take off, but while waiting for the down elevator, we heard another one approaching. We raced back to the window and were able to see it land and then take off a few minutes later. Derek was so excited. It was good to see him feeling a bit better after several days of very low energy.
Monday, September 19, 2011
Sunday morning Derek woke me with a giggle. He said, “Mommy! It’s 5:05!” At home before all of this, Derek and Kristen loved to watch the digital clocks in our house and look for what they call “special times.” Things like 11:11, 7:47, 12:34, any times that are symmetrical like 5:05, and “double times” such as 8:16, etc. In our hospital room, there is no digital clock, so yesterday my mom taught him how to read a conventional clock. Now he has learned how to look for “special times” on the conventional clock. It’s so good to hear a giggle, even at a very early hour. His energy seems to be waning a bit along with his appetite.
Derek’s blood count continues to drop, and along with it, his immunity. The nurses tell us it will reach the low point this week, and will hopefully begin to climb again slowly.
Derek has been having a lot of nausea and has not felt like eating much over the weekend and today. But there was one thing on his breakfast menu he really wanted, though: a waffle. Even though we had marked it several times on the menu options they send around the day before, he never received it. Finally with the help of several individuals, Derek’s waffle arrived after he had already gone to the playroom. When the nurse came in to inform us it had arrived, Derek practically leaped up from the table where he was playing and raced back to the room, dragging his IV stand and me behind him. I grabbed my camera and took some pictures of a very happy face before he devoured it. We marked it on our menu again for Tuesday, and I hope he gets it this time without any problems. But who knows, he may not feel like eating one tomorrow. We'll see.
Derek’s blood count continues to drop, and along with it, his immunity. The nurses tell us it will reach the low point this week, and will hopefully begin to climb again slowly.
Derek has been having a lot of nausea and has not felt like eating much over the weekend and today. But there was one thing on his breakfast menu he really wanted, though: a waffle. Even though we had marked it several times on the menu options they send around the day before, he never received it. Finally with the help of several individuals, Derek’s waffle arrived after he had already gone to the playroom. When the nurse came in to inform us it had arrived, Derek practically leaped up from the table where he was playing and raced back to the room, dragging his IV stand and me behind him. I grabbed my camera and took some pictures of a very happy face before he devoured it. We marked it on our menu again for Tuesday, and I hope he gets it this time without any problems. But who knows, he may not feel like eating one tomorrow. We'll see.
Sabbath, September 17, 2011
We received a couple of major shocks in the last two days. Yesterday (Friday) we were informed that our church (Azure Hills Church) was going to use money from their member assistance fund to help us replace the very worn carpet in our house with hard flooring that will be easier to keep clean when Derek comes home. What a gift! Thank you! Thank you! We have received such support from so many church friends, and it continually amazes us how generous everyone is with us! Every day, people (some of whom we have never met before) bring food for lunch and dinner. We so much appreciate the love shown in these practical ways. Thank you! We love you all!
This afternoon (Sabbath), we received the shock of our lives when the doctor came in to do rounds. After examining Derek, he said they were looking at sending him home on Monday. MONDAY! Vince and I looked at him in disbelief. After the doctor left, we expressed our concern to the nurse about the flooring that is going to be replaced. She agreed that he should not be home during that time and said she would talk to the doctor. We feel so unprepared in other ways as well. While we are pleased to know they feel is making such good progress, he has not hit the low point in his immunity yet. All of this is so new, it’s hard to wrap our minds around exactly what he will need when he comes home.
This afternoon (Sabbath), we received the shock of our lives when the doctor came in to do rounds. After examining Derek, he said they were looking at sending him home on Monday. MONDAY! Vince and I looked at him in disbelief. After the doctor left, we expressed our concern to the nurse about the flooring that is going to be replaced. She agreed that he should not be home during that time and said she would talk to the doctor. We feel so unprepared in other ways as well. While we are pleased to know they feel is making such good progress, he has not hit the low point in his immunity yet. All of this is so new, it’s hard to wrap our minds around exactly what he will need when he comes home.
Friday, September 16, 2011
Today was another rough day for Derek. It was really the first day he has obviously not felt good. After getting out of surgery last night at about 8:30 and recovery even later, Derek finally got to eat his first meal of the day about 11:00 p.m. last night, but he wasn’t feeling the greatest and didn’t eat much. Then after midnight, he couldn’t eat or drink again because they were planning to lightly sedate him to take a second bone marrow sample and do another spinal tap with chemo. That happened at 9:00 a.m. By 10:00 he was awake and ate breakfast about 10:30. He demolished everything on his tray. Hungry boy! He played for a while in his room and then his lunch came about 12:30. He started devouring his food, but must have still been processing breakfast because he wasn’t able to finish it all, though he tried.
Midmorning Derek received his second dose of two more chemo drugs he receives once a week. They were due yesterday, but they couldn’t give them because of the scheduled surgery.
Kristen came in the afternoon and they played together happily for quite a while. As he began his evening meal, he started out eating well, but suddenly said he felt like he was going to throw up. Nausea prevented him from eating more of his supper, and for the first time since coming here over a week ago, he looks sick. Here we go.
The reports from the surgery and the procedures this morning were quite encouraging, however. X-rays showed the mass in his chest has shrunk significantly and is almost gone. Lab reports showed that his bone marrow is about 10% white blood cell production, down from nearly 100% when we arrived a week ago. Cancer has not spread to his spinal fluid, so they are discontinuing two of the drugs they had been giving him. While he is beginning to show the signs of the battle raging inside him, his body is responding well to the treatments. His white count continues to drop, and he is entering a dangerous time for his immune system.
We ask that those who visit or prepare food for us, please be vigilant. If you or people you have been exposed to are sick in any way, including fever, coughing, runny nose, sneezing, please refrain from coming. We love you all and so appreciate what you are doing for us, but Derek has no immune system to fight even one germ, so we must not expose him. Thank you for your careful attention.
Midmorning Derek received his second dose of two more chemo drugs he receives once a week. They were due yesterday, but they couldn’t give them because of the scheduled surgery.
Kristen came in the afternoon and they played together happily for quite a while. As he began his evening meal, he started out eating well, but suddenly said he felt like he was going to throw up. Nausea prevented him from eating more of his supper, and for the first time since coming here over a week ago, he looks sick. Here we go.
The reports from the surgery and the procedures this morning were quite encouraging, however. X-rays showed the mass in his chest has shrunk significantly and is almost gone. Lab reports showed that his bone marrow is about 10% white blood cell production, down from nearly 100% when we arrived a week ago. Cancer has not spread to his spinal fluid, so they are discontinuing two of the drugs they had been giving him. While he is beginning to show the signs of the battle raging inside him, his body is responding well to the treatments. His white count continues to drop, and he is entering a dangerous time for his immune system.
We ask that those who visit or prepare food for us, please be vigilant. If you or people you have been exposed to are sick in any way, including fever, coughing, runny nose, sneezing, please refrain from coming. We love you all and so appreciate what you are doing for us, but Derek has no immune system to fight even one germ, so we must not expose him. Thank you for your careful attention.
Thursday, September 15, 2011
Thanks to your prayers and the grace and mercy of God we are being pulled from the pit. I can see, once again, and have hope for the future. Our faith is being severely tested, but God has not allowed anything we cannot handle with the strength He gives us. His strength is made perfect in our weakness. He has great strength and we have much weakness. Thank you again for your prayers on our behalf.
Today was a day of waiting Derek’s blood counts continue to fall, and before they fall too much, the doctor wanted him to get a permanent port put in so he doesn’t have his PICC line tubes hanging from his arm. There is always a risk of an active little boy pulling them out by accident. The dressings have to be changed weekly, which is painful, and the risk of infection is greater with its being external. The porta-cath, as it is called, will be placed in his upper chest just below his clavicle and will be placed just under the skin. Once the incisions heal, he can get it wet without fear of infection and be a bit more active. He can receive medications and IV fluids through it and also have blood drawn when needed. So he was put on stand-by for surgery today, meaning that he didn’t have a scheduled time, but would be taken in when they had an opening. However, he couldn’t eat or drink anything after midnight, so he was really hungry.
We waited, and tried to distract Derek by going to the play room, watching a video, and playing games with him. When the playroom closed for lunch, he looked at me with big tearful eyes and said, “Is this the second meal I have to miss?” It is so hard to know your child needs and wants something, but also know it is not in his best interest to give it to him. Does God ever feel this way?
First they told us it would be around 1 p.m. Then it was 3:30 p.m. Then 5:00. He missed his third meal. Finally just after 7 p.m. they took him in for surgery. This time we could not accompany him into the OR, and he was scared and tearful. He did really well with the anesthesia and the procedure. Now for recovery. He has another procedure in the morning.
Today was a day of waiting Derek’s blood counts continue to fall, and before they fall too much, the doctor wanted him to get a permanent port put in so he doesn’t have his PICC line tubes hanging from his arm. There is always a risk of an active little boy pulling them out by accident. The dressings have to be changed weekly, which is painful, and the risk of infection is greater with its being external. The porta-cath, as it is called, will be placed in his upper chest just below his clavicle and will be placed just under the skin. Once the incisions heal, he can get it wet without fear of infection and be a bit more active. He can receive medications and IV fluids through it and also have blood drawn when needed. So he was put on stand-by for surgery today, meaning that he didn’t have a scheduled time, but would be taken in when they had an opening. However, he couldn’t eat or drink anything after midnight, so he was really hungry.
We waited, and tried to distract Derek by going to the play room, watching a video, and playing games with him. When the playroom closed for lunch, he looked at me with big tearful eyes and said, “Is this the second meal I have to miss?” It is so hard to know your child needs and wants something, but also know it is not in his best interest to give it to him. Does God ever feel this way?
First they told us it would be around 1 p.m. Then it was 3:30 p.m. Then 5:00. He missed his third meal. Finally just after 7 p.m. they took him in for surgery. This time we could not accompany him into the OR, and he was scared and tearful. He did really well with the anesthesia and the procedure. Now for recovery. He has another procedure in the morning.
Tuesday, September 13, 2011
I slept little last night, once again. How can I sleep when a battle of life and death is raging? And this time it was also raging in me. Not physical, but spiritual. I felt as though I were slipping into the depths of a deep dark chasm with no apparent bottom. Dense darkness engulfed me. While before I could see God’s hand with us, guiding us, seeing us through to a future and a hope, now I could see nothing. NOTHING. I felt totally helpless, vulnerable, and utterly alone, with no apparent way out. I longed to know someone was out there praying for me. I listened to the messages on my phone, just hear the voices of dear friends and family who have called to assure me of their love and prayers. Now I think I know just the teeniest, tiniest bit of what Jesus felt as He struggled in Gethsemane, longing to know His disciples were praying for Him. He had no one, but, praise God! I have an army! You have no idea how vital your prayers are to our survival through this experience, and we are so grateful for hosts of family and friends who are continually lifting us in prayer, (some even fasting on our behalf) when we cannot do it for ourselves. You are pulling us out of the pit. It is so encouraging to us to read your message of support and love. We love you all! (And in case you didn’t already realize it, your prayers are vital to your eternal survival, too. We are praying for you.)
Derek slept peacefully (well, as peacefully as can be expected when nurses come in every four hours to check vitals, and he woke up every hour or hour and a half to use the bathroom.) He awoke, happy and excited about the day’s potential. He talked more today than I think he ever has in a day before now. He had more visitors bringing him more toys. He played in the playroom again while my mom watched him and played with him. He still does not look sick, but we are fully aware that his time is coming. He is doing as expected. His white count is continuing to drop, and the doctors assure us that by next week, it will be zero. His risk of infection will skyrocket. But for now, he is still feeling pretty good. He does not complain much and does exactly what he is told to do. Of course he does not like many things that must be done, but he is coping just fine. In his mind, the positive things about being here outweigh the negatives, so we are thankful. The food renaming game continued at lunch today. Among the items on his plate were some mixed vegetables including cooked carots and green beans (which he likes) and yellow squash (which he doesn't.) The green beans became pipe fish. The squash became clown fish and went down easier if they were hiding in seaweed (lettuce). When I asked him if the cooked sliced carrots were sand dollars, he declared that they were too small to be dollars. "They are sand pennies," he said. We all laughed. Kristen was cleared to come onto the unit today and enjoyed spending a couple hours with Derek this afternoon.
Vince and I met with the oncology educator this morning. We got a crash course in how to live with a cancer patient. We learned what to expect and prepare for, what we will need to do and avoid, what to watch for, ever alert, knowing that the smallest things could lead to serious problems. We will have to make some significant changes in order to pull through this successfully. We were slammed with the realization that life as we have known it will not return for several years, even when things go very well. Resignation is setting in now. Fortunately, my mom was able to be with Derek all morning so after our education session, Vince and I had our first opportunity to sit together, talk, share, and cry together since this all began last Wednesday night. It was much needed.
Derek slept peacefully (well, as peacefully as can be expected when nurses come in every four hours to check vitals, and he woke up every hour or hour and a half to use the bathroom.) He awoke, happy and excited about the day’s potential. He talked more today than I think he ever has in a day before now. He had more visitors bringing him more toys. He played in the playroom again while my mom watched him and played with him. He still does not look sick, but we are fully aware that his time is coming. He is doing as expected. His white count is continuing to drop, and the doctors assure us that by next week, it will be zero. His risk of infection will skyrocket. But for now, he is still feeling pretty good. He does not complain much and does exactly what he is told to do. Of course he does not like many things that must be done, but he is coping just fine. In his mind, the positive things about being here outweigh the negatives, so we are thankful. The food renaming game continued at lunch today. Among the items on his plate were some mixed vegetables including cooked carots and green beans (which he likes) and yellow squash (which he doesn't.) The green beans became pipe fish. The squash became clown fish and went down easier if they were hiding in seaweed (lettuce). When I asked him if the cooked sliced carrots were sand dollars, he declared that they were too small to be dollars. "They are sand pennies," he said. We all laughed. Kristen was cleared to come onto the unit today and enjoyed spending a couple hours with Derek this afternoon.
Vince and I met with the oncology educator this morning. We got a crash course in how to live with a cancer patient. We learned what to expect and prepare for, what we will need to do and avoid, what to watch for, ever alert, knowing that the smallest things could lead to serious problems. We will have to make some significant changes in order to pull through this successfully. We were slammed with the realization that life as we have known it will not return for several years, even when things go very well. Resignation is setting in now. Fortunately, my mom was able to be with Derek all morning so after our education session, Vince and I had our first opportunity to sit together, talk, share, and cry together since this all began last Wednesday night. It was much needed.
Monday, September 12, 2011
Last night Derek was moved to the oncology unit. The doctor wanted him to get up and stand and walk around to prevent getting blood clots in his legs, but Derek was so weak that he just could not. The doctor had warned us that after having a white blood count as high as he had, his legs would feel really funny and weak when the count went down. This is because white blood cells are made in the long bones, such as his legs, and he almost certainly had had intense pain in his legs which he never told us about.
Monday morning he received a blood transfusion, and by the time I arrived he was walking and standing and not wanting to lie around in his bed at all. He went to the playroom in the morning with Vince and my mom before I arrived and had a great time playing with tractors and trucks which he brought back to the room when he was finished.
My mom helped him eat lunch and made a game of it. Together they renamed each item on his tray to be something from the ocean, and he pretended to be a dolphin, eating minnows (peas), seaweed (salad), and other things. He has a great appetite because of the medication he is on, so he eats pretty much everything on the tray. He is responding really well to the treatments and is perky and almost more energetic than I. In the afternoon, I took him back to the playroom, and he acted as if he had to play with all the toys this afternoon because he might have to leave and not have a chance. He does not realize that he will have PLENTY of time to play with everything in the room.
When the playroom closed, he still was not ready to settle down and sit in bed. The unit has several tricycles and cars for kids to ride, and he wanted to try them all out, acting again as though he might have to leave this wonderful place and not have a chance to try them all out. Many of vehicles were too small for him, but he found one large tricycle that fit just right. It said “John Deere” on the back, so that was even better. He raced up and down the hall narrowly missing people and objects while I chased after him with his IV stand, imploring him to slow down, and watch out for the people. He got all out of breath, and it was good to have him breathing deeply.
To add to his delight, several people stopped by to bring him special toys. It’s like Christmas in September. When asked by another mom on the unit whether he like it here, he quickly told her yes. He is blissfully unaware of the long journey ahead, and that is good. He can concentrate on being happy and getting well.
Vince and I, on the other hand, had a really hard day. As we looked around the ward at the other children with their little bald heads, a heavy dose of reality began to set in. We don’t have just a very sick child. We have a child with CANCER! Within a very few weeks, his thick dark hair will begin to fall out and he will begin to look like others with the disease they share. While Derek played happily, we were forced to stifle our tears, hide our pain for now, die on the inside only, and wait until the cover of night to let our tears flow unabated onto our pillows.
As I watched and listened to the suffering on this unit today, my anger began to grow. A boy with a brain tumor who can hardly walk; a little baby who has to receive injections in her eye every four hours for the next several days, her muffled screams piercing through closed doors; their mothers who turn away to hide their tears of very real pain, just as I. It is hellish! The thought that there is a being in our world so evil that he thinks this is fun fuels my fury. I hate him with every fiber of my being, and I cannot wait for him to be destroyed along with his horrid, evil tools of Suffering, Pain, and Death. Deliver us, oh God!
Monday morning he received a blood transfusion, and by the time I arrived he was walking and standing and not wanting to lie around in his bed at all. He went to the playroom in the morning with Vince and my mom before I arrived and had a great time playing with tractors and trucks which he brought back to the room when he was finished.
My mom helped him eat lunch and made a game of it. Together they renamed each item on his tray to be something from the ocean, and he pretended to be a dolphin, eating minnows (peas), seaweed (salad), and other things. He has a great appetite because of the medication he is on, so he eats pretty much everything on the tray. He is responding really well to the treatments and is perky and almost more energetic than I. In the afternoon, I took him back to the playroom, and he acted as if he had to play with all the toys this afternoon because he might have to leave and not have a chance. He does not realize that he will have PLENTY of time to play with everything in the room.
When the playroom closed, he still was not ready to settle down and sit in bed. The unit has several tricycles and cars for kids to ride, and he wanted to try them all out, acting again as though he might have to leave this wonderful place and not have a chance to try them all out. Many of vehicles were too small for him, but he found one large tricycle that fit just right. It said “John Deere” on the back, so that was even better. He raced up and down the hall narrowly missing people and objects while I chased after him with his IV stand, imploring him to slow down, and watch out for the people. He got all out of breath, and it was good to have him breathing deeply.
To add to his delight, several people stopped by to bring him special toys. It’s like Christmas in September. When asked by another mom on the unit whether he like it here, he quickly told her yes. He is blissfully unaware of the long journey ahead, and that is good. He can concentrate on being happy and getting well.
Vince and I, on the other hand, had a really hard day. As we looked around the ward at the other children with their little bald heads, a heavy dose of reality began to set in. We don’t have just a very sick child. We have a child with CANCER! Within a very few weeks, his thick dark hair will begin to fall out and he will begin to look like others with the disease they share. While Derek played happily, we were forced to stifle our tears, hide our pain for now, die on the inside only, and wait until the cover of night to let our tears flow unabated onto our pillows.
As I watched and listened to the suffering on this unit today, my anger began to grow. A boy with a brain tumor who can hardly walk; a little baby who has to receive injections in her eye every four hours for the next several days, her muffled screams piercing through closed doors; their mothers who turn away to hide their tears of very real pain, just as I. It is hellish! The thought that there is a being in our world so evil that he thinks this is fun fuels my fury. I hate him with every fiber of my being, and I cannot wait for him to be destroyed along with his horrid, evil tools of Suffering, Pain, and Death. Deliver us, oh God!
Sunday, September 11, 2011
Last night (Saturday night) proved to be a difficult. One of the possible side effects of one IV drug they are giving him is sleeplessness. He lay there quietly as though he wanted to go to sleep, but he just couldn’t. He finally fell asleep about 11:30 p.m. Then the nurse came in to check his vitals and give him a pill. He’d never swallowed a pill before, so that took a while and thoroughly woke him up. Throughout the night, he slept little, and very lightly.
While all his numbers were good and the doctor was very pleased with his progress, today was a hard day for Derek. He felt nauseous at times and starving hungry at others, complained of a headache, and was generally fussy. I’m sure lack of sleep contributed to it, but we are entering the second stage of a falling blood count. It is getting too low. This afternoon, they had to give him platelets and this evening they expect to do a blood transfusion.
Even though the day was tough at times, there were periods of happiness and playfulness. He dug a ditch (part of a cardboard box) with a digger they gave him and used pieces of cardboard for dirt. He laid a pipe (a twistie wire) in the ditch and covered it back in with cardboard pieces. The doctor has told him he won’t be playing in real dirt for quite a long time, so this will have to be the next best thing. The unit allowed Kristen to come in and stay through the afternoon and evening. She sat on the bed and watched videos and played playdough with him. They have missed each other, so it was good to have quality time. Friends brought a delicious supper, and for the first time since last Wednesday morning, the four of us had a meal together as a family. It was a very pleasant evening in our new reality.
A bed opened up on the oncology unit, so about 8:00 p.m. tonight they moved him to his new home for at least the next four weeks.Sabbath update, September 10, 2011
Hope. That’s what we have. On my way home last night (Friday), I turned on a CD a friend had given me for the kids. It is a Sing the Word CD. Shortly after beginning our journey home, Jeremiah 29:11 played. “For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope.”
As it played, it was as though God held out His hands and gently said, “This is YOUR verse for right now. Even though my thoughts are above your understanding, I KNOW my thoughts for you, and I will tell you what they are. My thoughts for you are peace. My thoughts are not of evil. Those thoughts are coming from someone else who seeks to destroy you, your family, and all those who are watching your situation. My thoughts for you are of peace. As proof of that peace, which you may have if you choose to allow me to fill you with it, I will promise you a hope and a future.”
I don’t know just now what that future will look like, but I think I will choose to hope and to trust that God’s ways for us are filled with peace in the midst of evil. We see that God is giving us, even little Derek, what each of us needs to get through this.
Today Derek has made tremendous progress. He has been our happy little boy again. He has totally amazed the nurses and even given us some giggles. He is stable and ready to be transferred out of ICU to the oncology unit. We are waiting for a bed to open up, but right now they are completely full. His electrolytes are all normal, including potassium. His white blood count is 9.8 which is also normal. He is responding beautifully, and he seems to feel good.
As many of you know, Derek is usually a funny little boy. He continually sends us into laughter (sometimes secretly) at the things he says. Midmorning we received the menu options for Sunday’s meals. The nurse was also in the room as I was asking Derek which items on the menu sounded good to him, I came to a dessert selection for lunch. The choices were strawberry ice cream or a chocolate chip cookie. Derek has always had a very large sweet tooth. In fact he told us once that all his teeth were sweet teeth. I believe it! Knowing he would choose the ice cream, I said, “I think I know what you will choose, but I’ll ask you anyway. Ice cream or cookie?” Without hesitation he said, “Strawberry ice cream!” I laughed and said, “I KNEW it!” The nurse joined in and told him that was her favorite, too, and asked if he would share with her. Without missing a beat, he looked at her and said, “No. I think you can probably get some for yourself out there,” and he looked toward the door.
This afternoon, he discovered that the middle line on the monitor recorded his respiration and that by changing the way he breathed, he could make all manner of squiggles and lines show up on the monitor. First he tried holding his breath as long as he could. Then he breathed out and held it out as long as he could. It made boxy shapes and sent the alarms to sounding because he didn’t have enough respirations in a minute. Then he tried very rapid breathing and liked the tiny squiggles even more. He had to try to stop him though, for fear he would hyperventilate. When any nurse came in, he was excited to show them his newly acquired artistic abilities. We were beginning to think that if they didn’t transfer him soon, he would be driving the nurses crazy. But it is SO good to hear his little giggles and see his smiles.
Finally at about 8:30 they moved him out of PICU to the stepdown unit which usually specializes in cardiac care. There are still no rooms available. But the unit is practically empty. When we arrived, Derek was the only patient on this hall and had a nurse all to himself. One more patient has arrived since, but it is very quiet. Maybe we will get some sleep.
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