Friday, December 23, 2011
Tonight we are all home once again. Derek was released from the hospital yesterday afternoon, just in time for Christmas.
For more than a week following his hospital admission, Derek was in a lot of pain. Morphine did not even touch it, so they had to give him an even stronger medication that pretty much knocked him out. The only solution for pancreatitis is to let the pancreas rest, so once again, Derek could eat and drink nothing.
Saturday night, he spiked a fever of 102° so they started him on three antibiotics. He was severely dehydrated, and to make matters worse, he started leaking fluids into the space around the organs in his abdomen (called third spacing) and he got quite distended. They moved him to the special care unit which is usually occupied by transplant patients, but also serves as acute care for other patients. They finally got his pain managed by putting him on a continuous drip of dilaudid, a very strong pain medication. Once the pain was under control, he began to perk up a bit and spend some time playing with his Legos and some other toys people brought him for early Christmas presents.
Initially, Derek’s pancreatic enzymes dropped sharply, but then plateaued, still well above normal levels. After a week, his pain increased again, and they had to increase his pain medication. As he stabilized, they moved him from the special care unit back to the regular unit. With his pain under control, he began going to the playroom and giggling again. For me there is nothing so reassuring as hearing him giggle.
Chemotherapy started again the week after he was admitted. We were concerned that it would slow his progress further, but he tolerated it fine.
After nearly two weeks, they reduced his pain medication to see how he was progressing. He had no pain except when they took him off completely. Finally, they allowed him to drink clear liquids, which he tolerated fine. He was not too keen on them, however. It was obvious he was still not really feeling like eating yet, but he did not throw up. A bout of diarrhea had us concerned that he might have caught an infection, but it resolved within a couple days.
Finally, after two and a half weeks, they removed him from the pain medication completely and let him eat soft foods. He did not eat much, and frequently after just a few bites, he would lie down and say his tummy hurt a little. It never lasted long, though, and he did not want medication for it. By now, his energy level was increasing and it was obvious he was feeling a bit better. Our goal was to get him eating enough to take him off his IV nutrition so we could go home by Christmas. The hospital food was not appealing to him at all, and it was hard to get him to eat or drink much of anything.
On Wednesday of this week, they told us they would release him after his chemo treatment on Thursday. We were ecstatic! We would be home for Christmas!
Sure enough, yesterday afternoon, after three weeks in the hospital, he was released from the hospital as planned. Last night we drove around looking at Christmas lights, a favorite activity he has missed the last three weeks. Today he began eating better, and I think he is on the mend. It is so good to be home!
Merry Christmas everyone!
Friday, December 2, 2011
Derek is back in the hospital tonight. This time it is pancreatitis, which is an uncommon but not rare reaction to one of the chemo drugs he received two weeks ago. The drug should be out of his system in the next week or so, and that is probably how long it will take the pancreatitis to resolve. He will not receive that chemo drug (PEG) anymore. So he is back in the hospital and not able to eat once again. This time, the big difference is he does not want to eat and throws up anything given him by mouth.
It started yesterday when he complained of stomach pain occasionally throughout the day. I rubbed his back. He felt a bit better after a bowel movement, and last night when asked if his tummy still hurt, he replied that it didn’t.
This morning, however, he woke up early and came and crawled in bed with me and complained that his tummy hurt again in the same spot, directly under his belly button. It was bad enough that he occasionally moaned in pain. I knew something was wrong and called the doctor. She and I feared the pneumatosis was causing problems. She told us to come to the clinic for blood work, which we did. His counts came back expectedly low but higher than Monday’s, which was also expected. They sent us over to the hospital for an X-ray and asked us to return to the clinic when done. The X-ray showed nothing, so they didn’t think it was the pneumatosis, but it didn’t show anything else, either. They decided to look at his enzyme levels in his blood which would indicate a pancreas problem. While we waited again for the results of the blood test, they sent us back to the hospital for a CT scan to get a better look and to see if there was any evidence of the pneumatosis. After four more hours, the CT scan was complete and we headed back to the clinic. When we walked in the door, the doctor told us it was pancreatitis. So just after 6 p.m. this evening Derek was admitted. He has had intense abdominal pain that got progressively worse all day. They said it can last several days and to expect being in the hospital for most of next week.
Things to be thankful for:
- There was no evidence of any pneumatosis whatsoever. It has completely resolved now.
- Derek does not feel like eating. That is a blessing because he can’t eat. Last time he was starting NPO he was ravenously hungry.
- Good friends opened their home to Kristen all day today while I took Derek back and forth between the clinic and hospital. I really don’t know what I would do without them! THANK YOU FRIENDS!!
- When I walked in the door this evening and listened to my phone messages, there was a message from a friend saying she had fixed food for us not even knowing we were at the clinic today or that Derek was admitted this evening. I think God impressed her to fix extra food, and she did. Thank you, friend.
Sunday, November 27, 2011
We had an unusually quiet Thanksgiving this year. Typically our house is filled with people to help celebrate and give thanks, but this year, sniffles and sore throats kept us from joining others for the special occasion. So we celebrated in grand fashion at home by ourselves and managed to keep Derek healthy, which is a very big reason to thank God.
Derek has this week off from chemo before beginning the next five-week cycle on December 5. Tomorrow's clinic visit hopefully will be just a doctor visit and blood work, but we will see.
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| Pilgrims and Indians ready to feast together. |
We had an unusually quiet Thanksgiving this year. Typically our house is filled with people to help celebrate and give thanks, but this year, sniffles and sore throats kept us from joining others for the special occasion. So we celebrated in grand fashion at home by ourselves and managed to keep Derek healthy, which is a very big reason to thank God.
We spent the day building Lego houses and clinics, reading stories, and talking to family on the phone.
Derek has this week off from chemo before beginning the next five-week cycle on December 5. Tomorrow's clinic visit hopefully will be just a doctor visit and blood work, but we will see. Oxymora
An Oxymoron is a combination of contradictory or incongruous words. Sometimes used in humor, an oxymoron may also contain very deep meaning or a truth that may take some pondering to unpack. It seems my life is full of them, especially right now. Here are a few that describe my current experience.
Quick doctor visit
Ever-changing schedule
Hated blessing
Excruciating peace
As I think about it, however, the abundance of oxymora in my life right now is not limited to my current experience. Perhaps the life of every follower of Christ is characterized by oxymora. Second Corinthians 12:10 contains a couple of good examples: “Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ's sake. For when I am weak, then I am strong.
Pleasurable infirmities and distresses? Strength in being weak? Definitely oxymora to contemplate. What does each of these look like in practical life? Is it really possible to think of an infirmity or a distress as also a pleasure? Shouldn’t I just endure such things? Why do I need to find pleasure in them? Really, God? People frequently tell me these days to stay strong. But how do I stay strong when I am not strong to begin with? Perhaps this verse holds a clue. Thank You, God!
A favorite hymn of mine, penned by George Matheson in 1890, contains several compelling oxymora as well. Here are two verses from his original hymn.
My will is not my own till Thou hast made it Thine;
Sometimes events in my life right now seem incongruent, contradictory, even senseless. But like a dissonant chord that is quietly resolved in beautiful harmony, I believe that, as I surrender to my Composer, my oxymoronic life will someday make sense and be filled with even deeper meaning and beauty. Thank You, God!
Quick doctor visit
Ever-changing schedule
Hated blessing
Excruciating peace
As I think about it, however, the abundance of oxymora in my life right now is not limited to my current experience. Perhaps the life of every follower of Christ is characterized by oxymora. Second Corinthians 12:10 contains a couple of good examples: “Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ's sake. For when I am weak, then I am strong.
Pleasurable infirmities and distresses? Strength in being weak? Definitely oxymora to contemplate. What does each of these look like in practical life? Is it really possible to think of an infirmity or a distress as also a pleasure? Shouldn’t I just endure such things? Why do I need to find pleasure in them? Really, God? People frequently tell me these days to stay strong. But how do I stay strong when I am not strong to begin with? Perhaps this verse holds a clue. Thank You, God!
A favorite hymn of mine, penned by George Matheson in 1890, contains several compelling oxymora as well. Here are two verses from his original hymn.
Make me a captive, Lord, and then I shall be free;
Force me to render up my sword, and I shall conqueror be.
I sink in life’s alarms when by myself I stand;
Imprison me within Thine arms, and strong shall be my hand.
My will is not my own till Thou hast made it Thine;
If it would reach a monarch’s throne, it must its crown resign;
It only stands unbent, amid the clashing strife,
When on Thy bosom it has leant, and found in Thee its life.
Sometimes events in my life right now seem incongruent, contradictory, even senseless. But like a dissonant chord that is quietly resolved in beautiful harmony, I believe that, as I surrender to my Composer, my oxymoronic life will someday make sense and be filled with even deeper meaning and beauty. Thank You, God!
Three Weeks and Counting - November 18, 2011
On Monday when we went for more chemo, his blood counts were quite low. He received three different chemo drugs including one as a spinal. When the labs came back from his blood test, we found his hemoglobin was quite low, and they needed to give him a blood transfusion. So a clinic visit we anticipated would take only a couple of hours turned into an all-day event. After nearly eight hours, we finally walked out the door at 5:45 p.m. The doctor wanted follow-up blood work on Friday to see how his counts were doing. Just a quick blood draw.
This morning we went for our “quick” appointment. Two hours later, we finally had the lab results. Derek’s counts were so low I can hardly believe he feels good. His white count is 500. Normal is 5,000 to 10,000. His ANC is 100. Normal is over 2,000. He is at extreme risk right now. Four straight weeks of chemo have finally taken their toll on his immune system. The doctor wanted to give him a medication to help bring up his white blood count but needed to check to make sure it was alright, considering the study he is on. They and we do not want him to get kicked off for a simple mistake. Two hours later, after two people looked over all the study details, they approved the medication. He will need this injection for 5-7 consecutive days, but the clinic is closed over the weekend. I had to learn how to give it to him. The last time I tried to give him an injection, it did not go well, and we ended up going to the clinic every day instead. This time, that was not an option. He needed to let me give it to him. After some coaxing, some numbing cream on his arm, and a nap, he agreed to let me do it. The nurse held his arm and coached me while I gave the first injection in my life. He cried a little, but he did not fight it as he did before. We will see how tomorrow goes here at home. We finally left the clinic after our "short" visit of four and a half hours and headed to the pharmacy to pick up supplies and the medication to do the injections at home. Please pray that he will be willing to let me do it again.
Each time we visit the clinic, the nurse has to put a needle in Derek’s port in his upper chest. This is called “accessing” the port. They draw blood and administer most of his medications through the port. As we were eating lunch at the clinic this afternoon, Derek stuck a straw into a little milk box for a drink. Kristen piped up, “Look! The milk box’s port is accessed!” All three of us laughed. Derek joked that the white milk was actually white blood cells going into his body. When your children see everything from the perspective of cancer treatments, you know it has become too much a part of your life. We are left to find the humor in it.
We have another clinic visit on Monday and one more dose of chemo. Then we will have about two weeks break from chemo before we start the next round. Until his counts go up, we are sticking to the house. Please pray that Derek will remain healthy and that his white count will rise significantly over the weekend. We would really like to stay out of the hospital, especially for Thanksgiving.
Thursday, November 03, 2011
Derek was finally released from the hospital last Friday afternoon after his chemo treatment. We had a wonderful weekend at home once again. On Sabbath afternoon, we went up to the mountains to a quiet, unpopulated spot and went for a little hike with some close friends and family. Derek did really well, though he did not have the strength or stamina he had a few weeks ago. It frustrated him a bit that he could not keep up, climb trees, and scramble up rocks the way he used to. Vince carried him on his shoulders most of the way back. Even so, it was just good to get out and do something normal for a change, something we used to enjoy practically every Sabbath. With his counts dropping again now, we will have to stay home for the next couple of weeks.
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| Derek rode on Vince's shoulders most of the way back. He wore a mask except for pictures. |
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| Kristen and Derek with some good friends. |
Seasons
A friend recently gave me a CD with the song “Every Season” by Nichole Nordeman. As I listened to the song, the words of the second verse struck me.
“And even when the trees have just surrendered
To the harvest time
Forfeiting their leaves in late September
And sending us inside
Still I notice You when change begins
And I am braced for colder winds
I will offer thanks for what has been and what's to come”
I have seen God’s hand in the changes of our lives lately. Of all the seasons, in the experiences of our lives right now, it is definitely autumn. We’ve had so many happy times, pleasant memories, and abundant living of summer. Now I am learning to surrender to His hand in the changes of autumn, first for one child, and now for the second in an even deeper way. We have had to retreat indoors, bracing for what is ahead. While we don’t know just what it will be like, it will be winter. I can easily thank Him for what is past, and I can surrender to His hand today. But I am grappling with the idea that I must also thank Him for what is to come, knowing it will be winter. Cold. Pain. Heartache. Winter. How can I thank Him for the pain my children will suffer? Must I? To not simply surrender to Him for what lies ahead, but to THANK HIM for it must be the hardest test of all.
Perhaps surrender isn’t really deep enough unless there is gratitude with it. Can I really completely surrender if I do not trust God’s actions enough to thank Him for the worst situations ahead, whatever they may be.
Lord, I am willing, but just now I don’t know how I can do it. I’m going to need Your help to be thankful for what lies ahead, even though it will be winter.
“And even when the trees have just surrendered
To the harvest time
Forfeiting their leaves in late September
And sending us inside
Still I notice You when change begins
And I am braced for colder winds
I will offer thanks for what has been and what's to come”
I have seen God’s hand in the changes of our lives lately. Of all the seasons, in the experiences of our lives right now, it is definitely autumn. We’ve had so many happy times, pleasant memories, and abundant living of summer. Now I am learning to surrender to His hand in the changes of autumn, first for one child, and now for the second in an even deeper way. We have had to retreat indoors, bracing for what is ahead. While we don’t know just what it will be like, it will be winter. I can easily thank Him for what is past, and I can surrender to His hand today. But I am grappling with the idea that I must also thank Him for what is to come, knowing it will be winter. Cold. Pain. Heartache. Winter. How can I thank Him for the pain my children will suffer? Must I? To not simply surrender to Him for what lies ahead, but to THANK HIM for it must be the hardest test of all.
Perhaps surrender isn’t really deep enough unless there is gratitude with it. Can I really completely surrender if I do not trust God’s actions enough to thank Him for the worst situations ahead, whatever they may be.
Lord, I am willing, but just now I don’t know how I can do it. I’m going to need Your help to be thankful for what lies ahead, even though it will be winter.
Monday, October 24, 2011
This last week has been a roller coaster week of events and intense emotions very much akin to our first week after diagnosis.
While we knew that Derek has T-cell acute lymphocytic leukemia (T-ALL), we found out last week that he has a sub-type that puts him at higher risk of relapse later. He is considered to be pre-T. In a sense it was like hearing it for the first time as we realized that his prognosis is not as good as we had thought at first. We are still hopeful because he has responded so well to treatments so far.
Last week, before finding out that Derek has pre-T, we had a huge decision to make. Loma Linda is one of over a hundred hospitals worldwide participating in a phase III study of T-cell ALL. We had to decide whether to participate in this study or stick with the regular treatment protocol. With the current treatment protocol, they have about a 75% relapse rate in the first 10 years for pre-T ALL, which is not really very good. If you don’t want to know any more about the study and just want to know what we decided, you can skip to the next paragraph. It is a 4-arm study with the regular protocol as arm A, the control group. Arm B is the regular protocol with a new drug added. This drug has been used with success in T-cell relapse cases, but the 2-page list of possible side effects is rather horrifying (as are most of the chemo drugs). Relapses are much harder to treat, and it is best to avoid it if possible. The researchers wonder if, when added to the treatment up front, this drug will prevent relapse later on. Arm C is the regular protocol except for a higher dose of one of the medications. Arm D is like Arm C with the addition of the experimental drug.
After doing a LOT of research, asking lots of questions (I think we drove everyone crazy), agonizing, and praying, we felt that the potential benefits of the new drug protocol outweighed the potential risks. We decided we were ok with whichever arm he was placed in. We decided to participate in the study and prayed that God would direct to which arm of the study he would be randomized.
Within hours of signing the mountain of documents, we found out he was randomized to group D. He has both big guns pointed at him. Of course we do not know the future, how Derek will respond, or the side effects from which he will suffer, but we trust the One who does know. He has promised to be with us always and to direct our paths as we put our trust in Him. When we found out later that day that he was pre-T ALL, we felt that our decision was the best, and that perhaps he may need the tougher protocol to hopefully prevent a relapse later. He starts with five consecutive days of the new drug today, so we are about to find out how he will respond. Please pray that he will respond positively and that his side effects will be minimal.
Also last week, Derek continued to go without eating. By Monday he had pretty much quit asking for food. He knew he couldn’t eat. The x-rays taken every second day showed little or no improvement to the pneumotosis in his colon. The surgery team couldn’t figure out why it wasn’t healing and why he was completely asymptomatic, but they weren’t communicating too well with the oncology team who believed it was a previous problem caused by the high white count. We asked surgery to look at the ct scan done at the Corona hospital and look for any evidence of the problem when we were first admitted back in September. But they did not, until Thursday when they had a conference with Radiology to look at all his scans to see if there were any other possibilities. When they looked at the ct scan from Corona hospital, they saw that indeed the problem was there when we were first admitted, and Derek already had a perforated bowel – just what they were trying to prevent by not allowing him to eat all this time. The perforation was not visible on the second scan that landed us in the hospital this time, which means it had already healed. At first we were a little upset that they missed it at Corona. But as the reality of the situation dawned on us, we realized that his already critical situation would have been compounded even further if they had thought they also needed to do emergency bowel surgery that first night at Loma Linda; that was the night they removed half his white blood cells and started chemo. We believe God shielded it from them, knowing that he would heal, despite eating copious amounts of food and having his immunity knocked out by chemo. It is nothing short of miraculous. We are sure God answered the many prayers by preventing an even worse situation and bringing healing in the unlikeliest of circumstances. We only wish they had looked at the scan earlier to realize that the problem had been there all along and that he did not need to go without food any longer, even though the pneumatosis is still present.
So on Friday morning, Vince gave Derek his first sips of water in two weeks. It was enough to make a grown man cry. Apple juice followed, and then Gatorade. When he took that fine, we gave him applesauce, then yogurt, Cheereos, and part of an Engilsh muffin. His stomach has shrunk, and of course he is not able to eat the quantities of food he imagined he could, but little by little he is getting back to eating normally. They are now weaning him off his IV nutrition as he is able to eat more. Thank you all for your prayers in this regard. We firmly believe that God’s promise was kept, that before we call, He will answer. He had already healed the perforation before we ever knew there was a bowel problem to pray about. Thank you all for lifting Derek up in prayer.
While we knew that Derek has T-cell acute lymphocytic leukemia (T-ALL), we found out last week that he has a sub-type that puts him at higher risk of relapse later. He is considered to be pre-T. In a sense it was like hearing it for the first time as we realized that his prognosis is not as good as we had thought at first. We are still hopeful because he has responded so well to treatments so far.
Last week, before finding out that Derek has pre-T, we had a huge decision to make. Loma Linda is one of over a hundred hospitals worldwide participating in a phase III study of T-cell ALL. We had to decide whether to participate in this study or stick with the regular treatment protocol. With the current treatment protocol, they have about a 75% relapse rate in the first 10 years for pre-T ALL, which is not really very good. If you don’t want to know any more about the study and just want to know what we decided, you can skip to the next paragraph. It is a 4-arm study with the regular protocol as arm A, the control group. Arm B is the regular protocol with a new drug added. This drug has been used with success in T-cell relapse cases, but the 2-page list of possible side effects is rather horrifying (as are most of the chemo drugs). Relapses are much harder to treat, and it is best to avoid it if possible. The researchers wonder if, when added to the treatment up front, this drug will prevent relapse later on. Arm C is the regular protocol except for a higher dose of one of the medications. Arm D is like Arm C with the addition of the experimental drug.
After doing a LOT of research, asking lots of questions (I think we drove everyone crazy), agonizing, and praying, we felt that the potential benefits of the new drug protocol outweighed the potential risks. We decided we were ok with whichever arm he was placed in. We decided to participate in the study and prayed that God would direct to which arm of the study he would be randomized.
Within hours of signing the mountain of documents, we found out he was randomized to group D. He has both big guns pointed at him. Of course we do not know the future, how Derek will respond, or the side effects from which he will suffer, but we trust the One who does know. He has promised to be with us always and to direct our paths as we put our trust in Him. When we found out later that day that he was pre-T ALL, we felt that our decision was the best, and that perhaps he may need the tougher protocol to hopefully prevent a relapse later. He starts with five consecutive days of the new drug today, so we are about to find out how he will respond. Please pray that he will respond positively and that his side effects will be minimal.
Also last week, Derek continued to go without eating. By Monday he had pretty much quit asking for food. He knew he couldn’t eat. The x-rays taken every second day showed little or no improvement to the pneumotosis in his colon. The surgery team couldn’t figure out why it wasn’t healing and why he was completely asymptomatic, but they weren’t communicating too well with the oncology team who believed it was a previous problem caused by the high white count. We asked surgery to look at the ct scan done at the Corona hospital and look for any evidence of the problem when we were first admitted back in September. But they did not, until Thursday when they had a conference with Radiology to look at all his scans to see if there were any other possibilities. When they looked at the ct scan from Corona hospital, they saw that indeed the problem was there when we were first admitted, and Derek already had a perforated bowel – just what they were trying to prevent by not allowing him to eat all this time. The perforation was not visible on the second scan that landed us in the hospital this time, which means it had already healed. At first we were a little upset that they missed it at Corona. But as the reality of the situation dawned on us, we realized that his already critical situation would have been compounded even further if they had thought they also needed to do emergency bowel surgery that first night at Loma Linda; that was the night they removed half his white blood cells and started chemo. We believe God shielded it from them, knowing that he would heal, despite eating copious amounts of food and having his immunity knocked out by chemo. It is nothing short of miraculous. We are sure God answered the many prayers by preventing an even worse situation and bringing healing in the unlikeliest of circumstances. We only wish they had looked at the scan earlier to realize that the problem had been there all along and that he did not need to go without food any longer, even though the pneumatosis is still present.
So on Friday morning, Vince gave Derek his first sips of water in two weeks. It was enough to make a grown man cry. Apple juice followed, and then Gatorade. When he took that fine, we gave him applesauce, then yogurt, Cheereos, and part of an Engilsh muffin. His stomach has shrunk, and of course he is not able to eat the quantities of food he imagined he could, but little by little he is getting back to eating normally. They are now weaning him off his IV nutrition as he is able to eat more. Thank you all for your prayers in this regard. We firmly believe that God’s promise was kept, that before we call, He will answer. He had already healed the perforation before we ever knew there was a bowel problem to pray about. Thank you all for lifting Derek up in prayer.
Saturday, October 15, 2011
How much can a little boy take? It seems we are being forced to push his limits. Where do I start? With the good news or with the bad? I guess I will start with the bad first, and end with the good.
This week has been one of the worst so far. I have seen my little bundle of boundless energy reduced to a lethargic, week little boy who didn’t even want to get out of bed.
Derek is still not able to eat by mouth. This is day NINE! Originally when we went in, the oncologists were saying that if he remained symptom-free they would allow him to return to a normal diet in 72 hours. As that drew to a close with no change in the lining of his colon, the oncology team realized they would need to defer to the surgery team who was saying a week to 10 days with no food. He has not exhibited any of the typical symptoms of pneumatosis which is baffling the doctors, and they are not sure what to make of it. We know we cannot go on symptoms alone to determine his treatment or the length thereof. Now as we near the end of the 10 days, they are saying it may possibly take 2-3 WEEKS!!! We pray it is not that long.
They now think Derek may have had the pneumatosis for several weeks before it showed up on the scan. To add irony to irony, the drug which caused his intense hunger contributed to (if not caused) the problem which is now preventing him from eating. But it may have masked the symptoms so it was not detected sooner. His last dose of this medication was last Sabbath morning, and we were hopeful that the result would be a lowered metabolism and also the healing of the lining of his colon. It does seem to have helped with diminishing his intense hunger but has by no means eliminated it. He is receiving IV nutrition, which is giving his body the nutrients it needs, but the IV has not taken away the feelings of hunger either.
How do you tell a 5-year-old that he cannot eat for a week? It has been too much for even us to grasp. He has not handled well the thought that he will not be able to eat for even two days, so we have to take it one day at a time and just tell him that for today he cannot eat. It has gotten to the point that he rarely even asks. He knows our answer and seems resigned to it. The fact that he does not complain does not indicate he is not still suffering. Any time he asks now, he gets teary in the asking, anticipating our response. It breaks our hearts again and again. I feel guilty when I slip down to the cafeteria to eat some breakfast. I felt even more guilty one morning this week when they served biscuits and gravy, an item in the list of things which Derek says he wants to eat. That list also includes 18 hotdogs (linkettes), one plate of haystacks, peaches, macaroni and cheese, spaghetti with garlic bread, a big glass of apple juice, and other items that vary. He is still very hungry.
The week has been a week of waiting: waiting for the almost daily x-ray, waiting for the results of the x-ray to tell if his colon is any better, waiting to talk to the surgery team, waiting to talk to the oncology team, waiting for any signs of improvement in his colon.
As I mentioned in the last blog entry, he came down with a cold Saturday night and was placed in isolation. They cultured it and confirmed it was just a common cold and not something worse. It ended up being quite mild, and at first his spirits were still good. But because he couldn’t leave his room, he couldn’t go see the helicopters on the roof, and he couldn’t go to the playroom. We had to come up with ways to keep him entertained and distracted within the confines of his room.
Monday afternoon he was sedated for a bone marrow test and chemo in his spinal fluid once again. He slept the rest of the day. Tuesday was the day I anticipated the pain in his legs to return, and it did, like clockwork. This time it not only involved his calves and thighs, but also his hips. Fortunately, we were ready for it, and two doses of morphine took most of it away through the night. But the pain continued to linger in his hips for two more days, making it very painful to sit or stand. We put heat packs on it when he was in bed, and he was very reluctant to leave bed. By Thursday morning, Derek had run out of energy. The pain in his hips made standing or sitting very unpleasant, and his cold had removed his ability to leave his room. I could not get him out of bed for anything.
Fortunately, Thursday afternoon they determined he was over his cold and took him out of isolation. Tylenol managed to take the edge off his hip pain, and he went to the playroom for the afternoon. Friday, a little of his energy seemed to return, and he went to the playroom again. It wore him out, and he slept for three and a half hours in the afternoon. My little bundle of energy is running pretty low right now.
Now for the good news. The bone marrow test on Monday was to check for residual cancer cells and to help them determine his treatment for the next six months. They examined it on the molecular level as well as with the microscope. The results came back negative, meaning that even on molecular level, he has no remaining cancer cells in his marrow. Praise God! Now they just have to keep it that way. While Derek has had a serious complication from the medications, in the bigger picture, the medications are doing their job of ridding his body of cancer. We will have to manage the side effects.
This week has been one of the worst so far. I have seen my little bundle of boundless energy reduced to a lethargic, week little boy who didn’t even want to get out of bed.
Derek is still not able to eat by mouth. This is day NINE! Originally when we went in, the oncologists were saying that if he remained symptom-free they would allow him to return to a normal diet in 72 hours. As that drew to a close with no change in the lining of his colon, the oncology team realized they would need to defer to the surgery team who was saying a week to 10 days with no food. He has not exhibited any of the typical symptoms of pneumatosis which is baffling the doctors, and they are not sure what to make of it. We know we cannot go on symptoms alone to determine his treatment or the length thereof. Now as we near the end of the 10 days, they are saying it may possibly take 2-3 WEEKS!!! We pray it is not that long.
They now think Derek may have had the pneumatosis for several weeks before it showed up on the scan. To add irony to irony, the drug which caused his intense hunger contributed to (if not caused) the problem which is now preventing him from eating. But it may have masked the symptoms so it was not detected sooner. His last dose of this medication was last Sabbath morning, and we were hopeful that the result would be a lowered metabolism and also the healing of the lining of his colon. It does seem to have helped with diminishing his intense hunger but has by no means eliminated it. He is receiving IV nutrition, which is giving his body the nutrients it needs, but the IV has not taken away the feelings of hunger either.
How do you tell a 5-year-old that he cannot eat for a week? It has been too much for even us to grasp. He has not handled well the thought that he will not be able to eat for even two days, so we have to take it one day at a time and just tell him that for today he cannot eat. It has gotten to the point that he rarely even asks. He knows our answer and seems resigned to it. The fact that he does not complain does not indicate he is not still suffering. Any time he asks now, he gets teary in the asking, anticipating our response. It breaks our hearts again and again. I feel guilty when I slip down to the cafeteria to eat some breakfast. I felt even more guilty one morning this week when they served biscuits and gravy, an item in the list of things which Derek says he wants to eat. That list also includes 18 hotdogs (linkettes), one plate of haystacks, peaches, macaroni and cheese, spaghetti with garlic bread, a big glass of apple juice, and other items that vary. He is still very hungry.
The week has been a week of waiting: waiting for the almost daily x-ray, waiting for the results of the x-ray to tell if his colon is any better, waiting to talk to the surgery team, waiting to talk to the oncology team, waiting for any signs of improvement in his colon.
As I mentioned in the last blog entry, he came down with a cold Saturday night and was placed in isolation. They cultured it and confirmed it was just a common cold and not something worse. It ended up being quite mild, and at first his spirits were still good. But because he couldn’t leave his room, he couldn’t go see the helicopters on the roof, and he couldn’t go to the playroom. We had to come up with ways to keep him entertained and distracted within the confines of his room.
Monday afternoon he was sedated for a bone marrow test and chemo in his spinal fluid once again. He slept the rest of the day. Tuesday was the day I anticipated the pain in his legs to return, and it did, like clockwork. This time it not only involved his calves and thighs, but also his hips. Fortunately, we were ready for it, and two doses of morphine took most of it away through the night. But the pain continued to linger in his hips for two more days, making it very painful to sit or stand. We put heat packs on it when he was in bed, and he was very reluctant to leave bed. By Thursday morning, Derek had run out of energy. The pain in his hips made standing or sitting very unpleasant, and his cold had removed his ability to leave his room. I could not get him out of bed for anything.
Fortunately, Thursday afternoon they determined he was over his cold and took him out of isolation. Tylenol managed to take the edge off his hip pain, and he went to the playroom for the afternoon. Friday, a little of his energy seemed to return, and he went to the playroom again. It wore him out, and he slept for three and a half hours in the afternoon. My little bundle of energy is running pretty low right now.
Now for the good news. The bone marrow test on Monday was to check for residual cancer cells and to help them determine his treatment for the next six months. They examined it on the molecular level as well as with the microscope. The results came back negative, meaning that even on molecular level, he has no remaining cancer cells in his marrow. Praise God! Now they just have to keep it that way. While Derek has had a serious complication from the medications, in the bigger picture, the medications are doing their job of ridding his body of cancer. We will have to manage the side effects.
Early morning, Sunday, October 09, 2011
One month ago right now I was writing about those first traumatic 27 hours. We had finished our first round of chemo and were looking at the future uncertainly. Now we are nearly finished with his first phase of treatment, called Induction, and are looking at the next six-month phase in a bit of the same way. Overall, Derek has responded really well to this first series of treatments and is now officially in remission.
This current hospital stay has really been the first complication we’ve encountered. We are entering the third day of not being able to eat by mouth. It has not been easy. A few weeks ago we thought we had it bad when he had to wait all day for a surgical procedure without eating. He has handled it amazing well. While his giggle is not far from the surface, his giggles turn quickly to tears as soon as the distraction is gone. He feels so hungry, dispite the IV nutrition he is receiving. It is so hard for him to understand why he can’t eat when he is so hungry. He had his last dose of prednisone yesterday morning. That is the drug to blame for his intense hunger and also a probable cause of his pneumatosis. Hopefully the pneumatosis will dissipate now. The doctors say that if he still has no symptoms within 72 hours they will allow him to return to a normal diet and release him to go home. But as we enter the next phase of treatment, he will likely not feel very hungry.
Tonight we have hit another complication. Derek came down with a cold. They moved us to isolation so we don’t spread it to any other patients. While I can think of one advantage – we don’t have to listen to the neighbor’s TV going all night – I am concerned about this new development. How will his body fight this virus? His blood counts are good, but how efficiently will he be able to fight it? Will this keep us in the hospital longer? These are questions that remain to be answered. Please pray that he will recover quickly with no further complications.
This current hospital stay has really been the first complication we’ve encountered. We are entering the third day of not being able to eat by mouth. It has not been easy. A few weeks ago we thought we had it bad when he had to wait all day for a surgical procedure without eating. He has handled it amazing well. While his giggle is not far from the surface, his giggles turn quickly to tears as soon as the distraction is gone. He feels so hungry, dispite the IV nutrition he is receiving. It is so hard for him to understand why he can’t eat when he is so hungry. He had his last dose of prednisone yesterday morning. That is the drug to blame for his intense hunger and also a probable cause of his pneumatosis. Hopefully the pneumatosis will dissipate now. The doctors say that if he still has no symptoms within 72 hours they will allow him to return to a normal diet and release him to go home. But as we enter the next phase of treatment, he will likely not feel very hungry.
Tonight we have hit another complication. Derek came down with a cold. They moved us to isolation so we don’t spread it to any other patients. While I can think of one advantage – we don’t have to listen to the neighbor’s TV going all night – I am concerned about this new development. How will his body fight this virus? His blood counts are good, but how efficiently will he be able to fight it? Will this keep us in the hospital longer? These are questions that remain to be answered. Please pray that he will recover quickly with no further complications.
Friday, October 07, 2011
Derek’s progress was too good to be true. We are back in the hospital. Thursday afternoon we went for a CT scan as scheduled. On the way home, the nurse practitioner on the oncology unit called me on the way home to ask me to turn around and return to the hospital. They wanted to admit him because of something that showed up on the CT scan. Since we were almost home, we stopped there and picked up a few supplies for our hospital stay and drove back. They had a bed waiting for Derek when we walked in – the same one we occupied when we were first admitted one month ago tomorrow.
The radiologist indicated that there were air pockets that showed up in the lining of his large intestine. This condition, called pneumatosis, can be a complication from one of the medications or it can be a sign of infection. In any case, it can be serious if not dealt with. The radiologist resident who first read the scans also saw what he thought was a small blood clot in his lower lung. Later review by the attending radiologist and an oncologist did not show the clot, and he has not had any symptoms of such. So they are not worried about that now, but they wanted to hook him to IV antibiotics immediately for his bowel problem. He has not had any symptoms of pneumatosis (severe abdominal pain, diarrhea, fever) so hopefully it is not too serious and will resolve itself quickly. We’re praying for a miracle.
They want the bowel to have complete rest, so the hardest part for Derek is that he will not be able to eat or drink anything until the problem is corrected. They are afraid that if he eats, it will irritate the bowel further and could possibly perforate it, which would mean immediate, emergency surgery. If the problem gets worse, they may have to perform surgery to remove that part of the bowel. The ironic part is that the same medication which sometimes causes this condition is also making him ravenously hungry. They will start IV nutrition tonight, but some people have told me it will not likely take away his feelings of hunger but will only provide the nutrition his body needs. His nurse told me tonight he is probably the only one on the unit who feels like eating and the only one who can not eat.
Any time he passed gas today, Derek would tell me that the air bubbles were out now and that he should be able to eat. It’s so hard for him to understand why he cannot eat, and so hard to listen to his cries of hunger and be unable to help. I tried to keep him distracted, but by the end of the day, nothing worked. I don’t know how we will manage several days of this, maybe even a week to 10 days. Please join us in praying for a quick healing of his large intestine.
The radiologist indicated that there were air pockets that showed up in the lining of his large intestine. This condition, called pneumatosis, can be a complication from one of the medications or it can be a sign of infection. In any case, it can be serious if not dealt with. The radiologist resident who first read the scans also saw what he thought was a small blood clot in his lower lung. Later review by the attending radiologist and an oncologist did not show the clot, and he has not had any symptoms of such. So they are not worried about that now, but they wanted to hook him to IV antibiotics immediately for his bowel problem. He has not had any symptoms of pneumatosis (severe abdominal pain, diarrhea, fever) so hopefully it is not too serious and will resolve itself quickly. We’re praying for a miracle.
They want the bowel to have complete rest, so the hardest part for Derek is that he will not be able to eat or drink anything until the problem is corrected. They are afraid that if he eats, it will irritate the bowel further and could possibly perforate it, which would mean immediate, emergency surgery. If the problem gets worse, they may have to perform surgery to remove that part of the bowel. The ironic part is that the same medication which sometimes causes this condition is also making him ravenously hungry. They will start IV nutrition tonight, but some people have told me it will not likely take away his feelings of hunger but will only provide the nutrition his body needs. His nurse told me tonight he is probably the only one on the unit who feels like eating and the only one who can not eat.
Any time he passed gas today, Derek would tell me that the air bubbles were out now and that he should be able to eat. It’s so hard for him to understand why he cannot eat, and so hard to listen to his cries of hunger and be unable to help. I tried to keep him distracted, but by the end of the day, nothing worked. I don’t know how we will manage several days of this, maybe even a week to 10 days. Please join us in praying for a quick healing of his large intestine.
Tuesday, October 04, 2011
Derek is doing so well it is almost too good to be true. For those interested in his CBC numbers from yesterday, here they are. WBC=2.7, ANC=1800, Hgb=10.7, Plts=172. He received two chemo drugs yesterday but has had no side effects from them at all so far, not even nausea. We have not had to give him any anti-nausea meds this time. His appetite has not decreased at all this round, and he is eating like a very hungry horse. He even asked for seconds on cooked cabbage today. (Now before all you moms start wishing you could put your kids on chemo just so they would eat their vegies, let me tell you there are probably much better ways to accomplish that goal.) The pain in his legs only lasted that one night, which was plenty long, but it did end. It is a side effect of one of the chemo drugs and seems to hit him the worst about a week after treatment. So next week about this time, it may be back, and it has gotten progressively worse each time. He did not have a bone marrow test yesterday as I had expected. It is scheduled for this coming Monday along with another spinal tap.
After those tests and a CT scan this week, they will decide what the next six months’ treatment protocol will be, and we will be finished with phase one of treatment called Induction.
Has it been a month already? In some ways it seems like an eternity, and in other ways, the time has flown. For now, the important thing is that Derek is responding well to treatment, and for that we are so thankful. God has been with us so far, and we know He will remain. Thank you all for your prayers.
After those tests and a CT scan this week, they will decide what the next six months’ treatment protocol will be, and we will be finished with phase one of treatment called Induction.
Has it been a month already? In some ways it seems like an eternity, and in other ways, the time has flown. For now, the important thing is that Derek is responding well to treatment, and for that we are so thankful. God has been with us so far, and we know He will remain. Thank you all for your prayers.
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