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.
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.
Sunday, October 2, 2011
It’s been almost a week since Derek came home from the hospital. He has done really well at home, and we have been careful to do everything we can to keep it that way. There are moments in the day when it could almost seem as though nothing at all has happened and we are back to life as usual. Sometimes it still seems as though this is just a very long dream and nothing really has changed. But then there are the things that pull us back to reality and remind us that indeed very much has changed. We are changed, and the life we are living is no dream. It’s a nightmare.
The most obvious change is Derek’s rapidly thinning hair and the facemask he has to wear any time he goes outdoors. He knows his hair will all fall out, and he will have a bald head just like a little friend he made in the hospital. He’s o.k. with that. He doesn’t complain about the facemasks any more, either. The host of medications I dispense morning and evening make me feel like an apothecary. He dutifully takes the medicines all by himself. He has to be on a low-sodium diet with no concentrated sweets. He doesn’t complain if his peas or potatoes don’t have salt on them. Instead, he won’t eat food that he thinks is too salty for what he should have. He asks if pie or dates or cookies are concentrated sweets. Yes, he says those words. My little Mr. Sweet Tooth wants to make sure he isn’t getting too much!
Then there are the frequent tummy aches that make him lie down for a while. Sometimes he experiences such intense pain in his legs that he can’t walk. Sometime it even awakens him from sleep. Tylenol doesn’t touch the pain he feels, and he cries or groans or grunts. He’s not o.k. with that, and neither am I. I feel completely helpless as I lie beside him holding his hand and attempting to comfort him. I wish I could bear the pain for him, but I can’t. I lie there, praying for him, and claiming the promise that God will not give him anything he cannot bear but will give him the strength he needs. I pray he finds God’s promise true for himself through all of this. As he drifts back to sleep, I wonder how much rest he will get before the pain awakens him again.
Then there’s tomorrow. A doctor’s appointment. Another dose of chemo. Another sedation for a bone marrow sample. More blood work.
No, it’s not a dream. This is all too real.
The most obvious change is Derek’s rapidly thinning hair and the facemask he has to wear any time he goes outdoors. He knows his hair will all fall out, and he will have a bald head just like a little friend he made in the hospital. He’s o.k. with that. He doesn’t complain about the facemasks any more, either. The host of medications I dispense morning and evening make me feel like an apothecary. He dutifully takes the medicines all by himself. He has to be on a low-sodium diet with no concentrated sweets. He doesn’t complain if his peas or potatoes don’t have salt on them. Instead, he won’t eat food that he thinks is too salty for what he should have. He asks if pie or dates or cookies are concentrated sweets. Yes, he says those words. My little Mr. Sweet Tooth wants to make sure he isn’t getting too much!
Then there are the frequent tummy aches that make him lie down for a while. Sometimes he experiences such intense pain in his legs that he can’t walk. Sometime it even awakens him from sleep. Tylenol doesn’t touch the pain he feels, and he cries or groans or grunts. He’s not o.k. with that, and neither am I. I feel completely helpless as I lie beside him holding his hand and attempting to comfort him. I wish I could bear the pain for him, but I can’t. I lie there, praying for him, and claiming the promise that God will not give him anything he cannot bear but will give him the strength he needs. I pray he finds God’s promise true for himself through all of this. As he drifts back to sleep, I wonder how much rest he will get before the pain awakens him again.
Then there’s tomorrow. A doctor’s appointment. Another dose of chemo. Another sedation for a bone marrow sample. More blood work.
No, it’s not a dream. This is all too real.
Friday, September 30, 2011
Friday evening at home… What a lovely time we’ve had. Derek requested one of our two traditional supper menu options: matzo ball soup and smoothies. He helped me make both. We ate it with candlelight and our special Sabbath song. Later, Kristen played duets with me on the piano while we all sang together. It is so nice to be at home together again.
I think one of the things Derek is enjoying the most about being home is being able to do something useful. He is such a little worker. I think he missed working more than anything while he was in the hospital. He helps me sweep, put things away, and cook. Just about whatever I am working on, he asks to help. Even with all the new toys he has received, Derek tells me he has nothing to do if there isn’t some job he can help with. Did I mention that it’s good to have him home again?
I think one of the things Derek is enjoying the most about being home is being able to do something useful. He is such a little worker. I think he missed working more than anything while he was in the hospital. He helps me sweep, put things away, and cook. Just about whatever I am working on, he asks to help. Even with all the new toys he has received, Derek tells me he has nothing to do if there isn’t some job he can help with. Did I mention that it’s good to have him home again?
Tuesday, September 27, 2011
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.
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.
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