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.
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.
Monday, September 19, 2011
Sunday morning Derek woke me with a giggle. He said, “Mommy! It’s 5:05!” At home before all of this, Derek and Kristen loved to watch the digital clocks in our house and look for what they call “special times.” Things like 11:11, 7:47, 12:34, any times that are symmetrical like 5:05, and “double times” such as 8:16, etc. In our hospital room, there is no digital clock, so yesterday my mom taught him how to read a conventional clock. Now he has learned how to look for “special times” on the conventional clock. It’s so good to hear a giggle, even at a very early hour. His energy seems to be waning a bit along with his appetite.
Derek’s blood count continues to drop, and along with it, his immunity. The nurses tell us it will reach the low point this week, and will hopefully begin to climb again slowly.
Derek has been having a lot of nausea and has not felt like eating much over the weekend and today. But there was one thing on his breakfast menu he really wanted, though: a waffle. Even though we had marked it several times on the menu options they send around the day before, he never received it. Finally with the help of several individuals, Derek’s waffle arrived after he had already gone to the playroom. When the nurse came in to inform us it had arrived, Derek practically leaped up from the table where he was playing and raced back to the room, dragging his IV stand and me behind him. I grabbed my camera and took some pictures of a very happy face before he devoured it. We marked it on our menu again for Tuesday, and I hope he gets it this time without any problems. But who knows, he may not feel like eating one tomorrow. We'll see.
Derek’s blood count continues to drop, and along with it, his immunity. The nurses tell us it will reach the low point this week, and will hopefully begin to climb again slowly.
Derek has been having a lot of nausea and has not felt like eating much over the weekend and today. But there was one thing on his breakfast menu he really wanted, though: a waffle. Even though we had marked it several times on the menu options they send around the day before, he never received it. Finally with the help of several individuals, Derek’s waffle arrived after he had already gone to the playroom. When the nurse came in to inform us it had arrived, Derek practically leaped up from the table where he was playing and raced back to the room, dragging his IV stand and me behind him. I grabbed my camera and took some pictures of a very happy face before he devoured it. We marked it on our menu again for Tuesday, and I hope he gets it this time without any problems. But who knows, he may not feel like eating one tomorrow. We'll see.
Sabbath, September 17, 2011
We received a couple of major shocks in the last two days. Yesterday (Friday) we were informed that our church (Azure Hills Church) was going to use money from their member assistance fund to help us replace the very worn carpet in our house with hard flooring that will be easier to keep clean when Derek comes home. What a gift! Thank you! Thank you! We have received such support from so many church friends, and it continually amazes us how generous everyone is with us! Every day, people (some of whom we have never met before) bring food for lunch and dinner. We so much appreciate the love shown in these practical ways. Thank you! We love you all!
This afternoon (Sabbath), we received the shock of our lives when the doctor came in to do rounds. After examining Derek, he said they were looking at sending him home on Monday. MONDAY! Vince and I looked at him in disbelief. After the doctor left, we expressed our concern to the nurse about the flooring that is going to be replaced. She agreed that he should not be home during that time and said she would talk to the doctor. We feel so unprepared in other ways as well. While we are pleased to know they feel is making such good progress, he has not hit the low point in his immunity yet. All of this is so new, it’s hard to wrap our minds around exactly what he will need when he comes home.
This afternoon (Sabbath), we received the shock of our lives when the doctor came in to do rounds. After examining Derek, he said they were looking at sending him home on Monday. MONDAY! Vince and I looked at him in disbelief. After the doctor left, we expressed our concern to the nurse about the flooring that is going to be replaced. She agreed that he should not be home during that time and said she would talk to the doctor. We feel so unprepared in other ways as well. While we are pleased to know they feel is making such good progress, he has not hit the low point in his immunity yet. All of this is so new, it’s hard to wrap our minds around exactly what he will need when he comes home.
Friday, September 16, 2011
Today was another rough day for Derek. It was really the first day he has obviously not felt good. After getting out of surgery last night at about 8:30 and recovery even later, Derek finally got to eat his first meal of the day about 11:00 p.m. last night, but he wasn’t feeling the greatest and didn’t eat much. Then after midnight, he couldn’t eat or drink again because they were planning to lightly sedate him to take a second bone marrow sample and do another spinal tap with chemo. That happened at 9:00 a.m. By 10:00 he was awake and ate breakfast about 10:30. He demolished everything on his tray. Hungry boy! He played for a while in his room and then his lunch came about 12:30. He started devouring his food, but must have still been processing breakfast because he wasn’t able to finish it all, though he tried.
Midmorning Derek received his second dose of two more chemo drugs he receives once a week. They were due yesterday, but they couldn’t give them because of the scheduled surgery.
Kristen came in the afternoon and they played together happily for quite a while. As he began his evening meal, he started out eating well, but suddenly said he felt like he was going to throw up. Nausea prevented him from eating more of his supper, and for the first time since coming here over a week ago, he looks sick. Here we go.
The reports from the surgery and the procedures this morning were quite encouraging, however. X-rays showed the mass in his chest has shrunk significantly and is almost gone. Lab reports showed that his bone marrow is about 10% white blood cell production, down from nearly 100% when we arrived a week ago. Cancer has not spread to his spinal fluid, so they are discontinuing two of the drugs they had been giving him. While he is beginning to show the signs of the battle raging inside him, his body is responding well to the treatments. His white count continues to drop, and he is entering a dangerous time for his immune system.
We ask that those who visit or prepare food for us, please be vigilant. If you or people you have been exposed to are sick in any way, including fever, coughing, runny nose, sneezing, please refrain from coming. We love you all and so appreciate what you are doing for us, but Derek has no immune system to fight even one germ, so we must not expose him. Thank you for your careful attention.
Midmorning Derek received his second dose of two more chemo drugs he receives once a week. They were due yesterday, but they couldn’t give them because of the scheduled surgery.
Kristen came in the afternoon and they played together happily for quite a while. As he began his evening meal, he started out eating well, but suddenly said he felt like he was going to throw up. Nausea prevented him from eating more of his supper, and for the first time since coming here over a week ago, he looks sick. Here we go.
The reports from the surgery and the procedures this morning were quite encouraging, however. X-rays showed the mass in his chest has shrunk significantly and is almost gone. Lab reports showed that his bone marrow is about 10% white blood cell production, down from nearly 100% when we arrived a week ago. Cancer has not spread to his spinal fluid, so they are discontinuing two of the drugs they had been giving him. While he is beginning to show the signs of the battle raging inside him, his body is responding well to the treatments. His white count continues to drop, and he is entering a dangerous time for his immune system.
We ask that those who visit or prepare food for us, please be vigilant. If you or people you have been exposed to are sick in any way, including fever, coughing, runny nose, sneezing, please refrain from coming. We love you all and so appreciate what you are doing for us, but Derek has no immune system to fight even one germ, so we must not expose him. Thank you for your careful attention.
Thursday, September 15, 2011
Thanks to your prayers and the grace and mercy of God we are being pulled from the pit. I can see, once again, and have hope for the future. Our faith is being severely tested, but God has not allowed anything we cannot handle with the strength He gives us. His strength is made perfect in our weakness. He has great strength and we have much weakness. Thank you again for your prayers on our behalf.
Today was a day of waiting Derek’s blood counts continue to fall, and before they fall too much, the doctor wanted him to get a permanent port put in so he doesn’t have his PICC line tubes hanging from his arm. There is always a risk of an active little boy pulling them out by accident. The dressings have to be changed weekly, which is painful, and the risk of infection is greater with its being external. The porta-cath, as it is called, will be placed in his upper chest just below his clavicle and will be placed just under the skin. Once the incisions heal, he can get it wet without fear of infection and be a bit more active. He can receive medications and IV fluids through it and also have blood drawn when needed. So he was put on stand-by for surgery today, meaning that he didn’t have a scheduled time, but would be taken in when they had an opening. However, he couldn’t eat or drink anything after midnight, so he was really hungry.
We waited, and tried to distract Derek by going to the play room, watching a video, and playing games with him. When the playroom closed for lunch, he looked at me with big tearful eyes and said, “Is this the second meal I have to miss?” It is so hard to know your child needs and wants something, but also know it is not in his best interest to give it to him. Does God ever feel this way?
First they told us it would be around 1 p.m. Then it was 3:30 p.m. Then 5:00. He missed his third meal. Finally just after 7 p.m. they took him in for surgery. This time we could not accompany him into the OR, and he was scared and tearful. He did really well with the anesthesia and the procedure. Now for recovery. He has another procedure in the morning.
Today was a day of waiting Derek’s blood counts continue to fall, and before they fall too much, the doctor wanted him to get a permanent port put in so he doesn’t have his PICC line tubes hanging from his arm. There is always a risk of an active little boy pulling them out by accident. The dressings have to be changed weekly, which is painful, and the risk of infection is greater with its being external. The porta-cath, as it is called, will be placed in his upper chest just below his clavicle and will be placed just under the skin. Once the incisions heal, he can get it wet without fear of infection and be a bit more active. He can receive medications and IV fluids through it and also have blood drawn when needed. So he was put on stand-by for surgery today, meaning that he didn’t have a scheduled time, but would be taken in when they had an opening. However, he couldn’t eat or drink anything after midnight, so he was really hungry.
We waited, and tried to distract Derek by going to the play room, watching a video, and playing games with him. When the playroom closed for lunch, he looked at me with big tearful eyes and said, “Is this the second meal I have to miss?” It is so hard to know your child needs and wants something, but also know it is not in his best interest to give it to him. Does God ever feel this way?
First they told us it would be around 1 p.m. Then it was 3:30 p.m. Then 5:00. He missed his third meal. Finally just after 7 p.m. they took him in for surgery. This time we could not accompany him into the OR, and he was scared and tearful. He did really well with the anesthesia and the procedure. Now for recovery. He has another procedure in the morning.
Tuesday, September 13, 2011
I slept little last night, once again. How can I sleep when a battle of life and death is raging? And this time it was also raging in me. Not physical, but spiritual. I felt as though I were slipping into the depths of a deep dark chasm with no apparent bottom. Dense darkness engulfed me. While before I could see God’s hand with us, guiding us, seeing us through to a future and a hope, now I could see nothing. NOTHING. I felt totally helpless, vulnerable, and utterly alone, with no apparent way out. I longed to know someone was out there praying for me. I listened to the messages on my phone, just hear the voices of dear friends and family who have called to assure me of their love and prayers. Now I think I know just the teeniest, tiniest bit of what Jesus felt as He struggled in Gethsemane, longing to know His disciples were praying for Him. He had no one, but, praise God! I have an army! You have no idea how vital your prayers are to our survival through this experience, and we are so grateful for hosts of family and friends who are continually lifting us in prayer, (some even fasting on our behalf) when we cannot do it for ourselves. You are pulling us out of the pit. It is so encouraging to us to read your message of support and love. We love you all! (And in case you didn’t already realize it, your prayers are vital to your eternal survival, too. We are praying for you.)
Derek slept peacefully (well, as peacefully as can be expected when nurses come in every four hours to check vitals, and he woke up every hour or hour and a half to use the bathroom.) He awoke, happy and excited about the day’s potential. He talked more today than I think he ever has in a day before now. He had more visitors bringing him more toys. He played in the playroom again while my mom watched him and played with him. He still does not look sick, but we are fully aware that his time is coming. He is doing as expected. His white count is continuing to drop, and the doctors assure us that by next week, it will be zero. His risk of infection will skyrocket. But for now, he is still feeling pretty good. He does not complain much and does exactly what he is told to do. Of course he does not like many things that must be done, but he is coping just fine. In his mind, the positive things about being here outweigh the negatives, so we are thankful. The food renaming game continued at lunch today. Among the items on his plate were some mixed vegetables including cooked carots and green beans (which he likes) and yellow squash (which he doesn't.) The green beans became pipe fish. The squash became clown fish and went down easier if they were hiding in seaweed (lettuce). When I asked him if the cooked sliced carrots were sand dollars, he declared that they were too small to be dollars. "They are sand pennies," he said. We all laughed. Kristen was cleared to come onto the unit today and enjoyed spending a couple hours with Derek this afternoon.
Vince and I met with the oncology educator this morning. We got a crash course in how to live with a cancer patient. We learned what to expect and prepare for, what we will need to do and avoid, what to watch for, ever alert, knowing that the smallest things could lead to serious problems. We will have to make some significant changes in order to pull through this successfully. We were slammed with the realization that life as we have known it will not return for several years, even when things go very well. Resignation is setting in now. Fortunately, my mom was able to be with Derek all morning so after our education session, Vince and I had our first opportunity to sit together, talk, share, and cry together since this all began last Wednesday night. It was much needed.
Derek slept peacefully (well, as peacefully as can be expected when nurses come in every four hours to check vitals, and he woke up every hour or hour and a half to use the bathroom.) He awoke, happy and excited about the day’s potential. He talked more today than I think he ever has in a day before now. He had more visitors bringing him more toys. He played in the playroom again while my mom watched him and played with him. He still does not look sick, but we are fully aware that his time is coming. He is doing as expected. His white count is continuing to drop, and the doctors assure us that by next week, it will be zero. His risk of infection will skyrocket. But for now, he is still feeling pretty good. He does not complain much and does exactly what he is told to do. Of course he does not like many things that must be done, but he is coping just fine. In his mind, the positive things about being here outweigh the negatives, so we are thankful. The food renaming game continued at lunch today. Among the items on his plate were some mixed vegetables including cooked carots and green beans (which he likes) and yellow squash (which he doesn't.) The green beans became pipe fish. The squash became clown fish and went down easier if they were hiding in seaweed (lettuce). When I asked him if the cooked sliced carrots were sand dollars, he declared that they were too small to be dollars. "They are sand pennies," he said. We all laughed. Kristen was cleared to come onto the unit today and enjoyed spending a couple hours with Derek this afternoon.
Vince and I met with the oncology educator this morning. We got a crash course in how to live with a cancer patient. We learned what to expect and prepare for, what we will need to do and avoid, what to watch for, ever alert, knowing that the smallest things could lead to serious problems. We will have to make some significant changes in order to pull through this successfully. We were slammed with the realization that life as we have known it will not return for several years, even when things go very well. Resignation is setting in now. Fortunately, my mom was able to be with Derek all morning so after our education session, Vince and I had our first opportunity to sit together, talk, share, and cry together since this all began last Wednesday night. It was much needed.
Monday, September 12, 2011
Last night Derek was moved to the oncology unit. The doctor wanted him to get up and stand and walk around to prevent getting blood clots in his legs, but Derek was so weak that he just could not. The doctor had warned us that after having a white blood count as high as he had, his legs would feel really funny and weak when the count went down. This is because white blood cells are made in the long bones, such as his legs, and he almost certainly had had intense pain in his legs which he never told us about.
Monday morning he received a blood transfusion, and by the time I arrived he was walking and standing and not wanting to lie around in his bed at all. He went to the playroom in the morning with Vince and my mom before I arrived and had a great time playing with tractors and trucks which he brought back to the room when he was finished.
My mom helped him eat lunch and made a game of it. Together they renamed each item on his tray to be something from the ocean, and he pretended to be a dolphin, eating minnows (peas), seaweed (salad), and other things. He has a great appetite because of the medication he is on, so he eats pretty much everything on the tray. He is responding really well to the treatments and is perky and almost more energetic than I. In the afternoon, I took him back to the playroom, and he acted as if he had to play with all the toys this afternoon because he might have to leave and not have a chance. He does not realize that he will have PLENTY of time to play with everything in the room.
When the playroom closed, he still was not ready to settle down and sit in bed. The unit has several tricycles and cars for kids to ride, and he wanted to try them all out, acting again as though he might have to leave this wonderful place and not have a chance to try them all out. Many of vehicles were too small for him, but he found one large tricycle that fit just right. It said “John Deere” on the back, so that was even better. He raced up and down the hall narrowly missing people and objects while I chased after him with his IV stand, imploring him to slow down, and watch out for the people. He got all out of breath, and it was good to have him breathing deeply.
To add to his delight, several people stopped by to bring him special toys. It’s like Christmas in September. When asked by another mom on the unit whether he like it here, he quickly told her yes. He is blissfully unaware of the long journey ahead, and that is good. He can concentrate on being happy and getting well.
Vince and I, on the other hand, had a really hard day. As we looked around the ward at the other children with their little bald heads, a heavy dose of reality began to set in. We don’t have just a very sick child. We have a child with CANCER! Within a very few weeks, his thick dark hair will begin to fall out and he will begin to look like others with the disease they share. While Derek played happily, we were forced to stifle our tears, hide our pain for now, die on the inside only, and wait until the cover of night to let our tears flow unabated onto our pillows.
As I watched and listened to the suffering on this unit today, my anger began to grow. A boy with a brain tumor who can hardly walk; a little baby who has to receive injections in her eye every four hours for the next several days, her muffled screams piercing through closed doors; their mothers who turn away to hide their tears of very real pain, just as I. It is hellish! The thought that there is a being in our world so evil that he thinks this is fun fuels my fury. I hate him with every fiber of my being, and I cannot wait for him to be destroyed along with his horrid, evil tools of Suffering, Pain, and Death. Deliver us, oh God!
Monday morning he received a blood transfusion, and by the time I arrived he was walking and standing and not wanting to lie around in his bed at all. He went to the playroom in the morning with Vince and my mom before I arrived and had a great time playing with tractors and trucks which he brought back to the room when he was finished.
My mom helped him eat lunch and made a game of it. Together they renamed each item on his tray to be something from the ocean, and he pretended to be a dolphin, eating minnows (peas), seaweed (salad), and other things. He has a great appetite because of the medication he is on, so he eats pretty much everything on the tray. He is responding really well to the treatments and is perky and almost more energetic than I. In the afternoon, I took him back to the playroom, and he acted as if he had to play with all the toys this afternoon because he might have to leave and not have a chance. He does not realize that he will have PLENTY of time to play with everything in the room.
When the playroom closed, he still was not ready to settle down and sit in bed. The unit has several tricycles and cars for kids to ride, and he wanted to try them all out, acting again as though he might have to leave this wonderful place and not have a chance to try them all out. Many of vehicles were too small for him, but he found one large tricycle that fit just right. It said “John Deere” on the back, so that was even better. He raced up and down the hall narrowly missing people and objects while I chased after him with his IV stand, imploring him to slow down, and watch out for the people. He got all out of breath, and it was good to have him breathing deeply.
To add to his delight, several people stopped by to bring him special toys. It’s like Christmas in September. When asked by another mom on the unit whether he like it here, he quickly told her yes. He is blissfully unaware of the long journey ahead, and that is good. He can concentrate on being happy and getting well.
Vince and I, on the other hand, had a really hard day. As we looked around the ward at the other children with their little bald heads, a heavy dose of reality began to set in. We don’t have just a very sick child. We have a child with CANCER! Within a very few weeks, his thick dark hair will begin to fall out and he will begin to look like others with the disease they share. While Derek played happily, we were forced to stifle our tears, hide our pain for now, die on the inside only, and wait until the cover of night to let our tears flow unabated onto our pillows.
As I watched and listened to the suffering on this unit today, my anger began to grow. A boy with a brain tumor who can hardly walk; a little baby who has to receive injections in her eye every four hours for the next several days, her muffled screams piercing through closed doors; their mothers who turn away to hide their tears of very real pain, just as I. It is hellish! The thought that there is a being in our world so evil that he thinks this is fun fuels my fury. I hate him with every fiber of my being, and I cannot wait for him to be destroyed along with his horrid, evil tools of Suffering, Pain, and Death. Deliver us, oh God!
Sunday, September 11, 2011
Last night (Saturday night) proved to be a difficult. One of the possible side effects of one IV drug they are giving him is sleeplessness. He lay there quietly as though he wanted to go to sleep, but he just couldn’t. He finally fell asleep about 11:30 p.m. Then the nurse came in to check his vitals and give him a pill. He’d never swallowed a pill before, so that took a while and thoroughly woke him up. Throughout the night, he slept little, and very lightly.
While all his numbers were good and the doctor was very pleased with his progress, today was a hard day for Derek. He felt nauseous at times and starving hungry at others, complained of a headache, and was generally fussy. I’m sure lack of sleep contributed to it, but we are entering the second stage of a falling blood count. It is getting too low. This afternoon, they had to give him platelets and this evening they expect to do a blood transfusion.
Even though the day was tough at times, there were periods of happiness and playfulness. He dug a ditch (part of a cardboard box) with a digger they gave him and used pieces of cardboard for dirt. He laid a pipe (a twistie wire) in the ditch and covered it back in with cardboard pieces. The doctor has told him he won’t be playing in real dirt for quite a long time, so this will have to be the next best thing. The unit allowed Kristen to come in and stay through the afternoon and evening. She sat on the bed and watched videos and played playdough with him. They have missed each other, so it was good to have quality time. Friends brought a delicious supper, and for the first time since last Wednesday morning, the four of us had a meal together as a family. It was a very pleasant evening in our new reality.
A bed opened up on the oncology unit, so about 8:00 p.m. tonight they moved him to his new home for at least the next four weeks.Sabbath update, September 10, 2011
Hope. That’s what we have. On my way home last night (Friday), I turned on a CD a friend had given me for the kids. It is a Sing the Word CD. Shortly after beginning our journey home, Jeremiah 29:11 played. “For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope.”
As it played, it was as though God held out His hands and gently said, “This is YOUR verse for right now. Even though my thoughts are above your understanding, I KNOW my thoughts for you, and I will tell you what they are. My thoughts for you are peace. My thoughts are not of evil. Those thoughts are coming from someone else who seeks to destroy you, your family, and all those who are watching your situation. My thoughts for you are of peace. As proof of that peace, which you may have if you choose to allow me to fill you with it, I will promise you a hope and a future.”
I don’t know just now what that future will look like, but I think I will choose to hope and to trust that God’s ways for us are filled with peace in the midst of evil. We see that God is giving us, even little Derek, what each of us needs to get through this.
Today Derek has made tremendous progress. He has been our happy little boy again. He has totally amazed the nurses and even given us some giggles. He is stable and ready to be transferred out of ICU to the oncology unit. We are waiting for a bed to open up, but right now they are completely full. His electrolytes are all normal, including potassium. His white blood count is 9.8 which is also normal. He is responding beautifully, and he seems to feel good.
As many of you know, Derek is usually a funny little boy. He continually sends us into laughter (sometimes secretly) at the things he says. Midmorning we received the menu options for Sunday’s meals. The nurse was also in the room as I was asking Derek which items on the menu sounded good to him, I came to a dessert selection for lunch. The choices were strawberry ice cream or a chocolate chip cookie. Derek has always had a very large sweet tooth. In fact he told us once that all his teeth were sweet teeth. I believe it! Knowing he would choose the ice cream, I said, “I think I know what you will choose, but I’ll ask you anyway. Ice cream or cookie?” Without hesitation he said, “Strawberry ice cream!” I laughed and said, “I KNEW it!” The nurse joined in and told him that was her favorite, too, and asked if he would share with her. Without missing a beat, he looked at her and said, “No. I think you can probably get some for yourself out there,” and he looked toward the door.
This afternoon, he discovered that the middle line on the monitor recorded his respiration and that by changing the way he breathed, he could make all manner of squiggles and lines show up on the monitor. First he tried holding his breath as long as he could. Then he breathed out and held it out as long as he could. It made boxy shapes and sent the alarms to sounding because he didn’t have enough respirations in a minute. Then he tried very rapid breathing and liked the tiny squiggles even more. He had to try to stop him though, for fear he would hyperventilate. When any nurse came in, he was excited to show them his newly acquired artistic abilities. We were beginning to think that if they didn’t transfer him soon, he would be driving the nurses crazy. But it is SO good to hear his little giggles and see his smiles.
Finally at about 8:30 they moved him out of PICU to the stepdown unit which usually specializes in cardiac care. There are still no rooms available. But the unit is practically empty. When we arrived, Derek was the only patient on this hall and had a nurse all to himself. One more patient has arrived since, but it is very quiet. Maybe we will get some sleep.
Thoughts From a Sleepless Night - Day 2 (Friday, 9/9/11 2:30 a.m.)
Is it ok to hate a blessing?
50 years ago under theses circumstances I would be planning a funeral. It is a blessing that I am sitting here in PICU with a living and fighting son. But I hate it.
I hate the constant beeps that awaken me or keep me awake. But they mean life-saving care for my son and others on this unit. I hate that we are here at all.
I hate the painful procedures that make me have to hold a sobbing boy as tears course down both our cheeks. But those procedures are going to allow him to see another day and week and year.
I hate the chair that folds down into a cold, uncomfortable bed. But it allows me to catch a few minutes of sleep in between nurse visits.
I hate that housekeeping has to come in at 2:30 a.m., but they keep my son’s room clean and spotless 24/7 so he has the best chance to avoid further illness.
I hate the dozens of meds that have gone into my little boy’s arms and will pass through his kidneys. But they will help him fight this villain.
I hate that this has happened so fast; this is only the beginning of day 3 of even realizing that he was sick at all. But it is a blessing he hasn’t suffered more.
I hate all the tubes and wires attached in various ways to his little body. But they are monitoring him and providing access to give meds without having to poke him over and over.
I hate ignoring phone calls from friends because I just cant talk right now, knowing that the blessing of love and friendship behind those calls is going to help carry us through this dark valley.
Is it ok to hate a blessing? Perhaps I don’t hate these blessings. I think I hate needing to receive them. Is there a blessing in having to go through this?
--- --- ---
Friday proved to be a day of hope. Derek’s white blood count continued to drop throughout the day. As his potassium levels climbed, they gave him a medication to force it out of the bloodstream so it would be absorbed by the cells, thus reducing the risks to his heart. The miracle was that even though they were giving him so many fluids, the mass in his chest (which they believe to be grossly enlarged lymph nodes that have fused together) did not swell, further affecting his breathing. The rest of his electrolytes stayed pretty normal, and by the end of the day, his potassium was near normal as well. He was talking, smiling, and even laughing when his cousins came to visit. It was music to our ears and hearts.
Throughout the day we received so much encouragement from visitors. We also heard the news that friends were getting together to pray at our church Friday evening. We were totally blown away by the thought that so many people would leave their homes and dinners on a Friday evening after a busy work week and meet to pray for our precious son!
We have not had to worry for one minute about the care for Kristen. Wonderful friends have taken her under their wings and provided for her as their own children. When we have picked her up, she has been totally happy and unstressed, eagerly telling us all the fun things she did. Not having to worry about her care has been a huge blessing. Food has shown up at meal times, all orchestrated by wonderful people at Azure Hills Church. Cafeteria food does not hold a candle to your cooking!
While there is still a long dark valley ahead through which we must pass, all of this has been a river of love and support that is carrying us along. Thank you! Thank you!
50 years ago under theses circumstances I would be planning a funeral. It is a blessing that I am sitting here in PICU with a living and fighting son. But I hate it.
I hate the constant beeps that awaken me or keep me awake. But they mean life-saving care for my son and others on this unit. I hate that we are here at all.
I hate the painful procedures that make me have to hold a sobbing boy as tears course down both our cheeks. But those procedures are going to allow him to see another day and week and year.
I hate the chair that folds down into a cold, uncomfortable bed. But it allows me to catch a few minutes of sleep in between nurse visits.
I hate that housekeeping has to come in at 2:30 a.m., but they keep my son’s room clean and spotless 24/7 so he has the best chance to avoid further illness.
I hate the dozens of meds that have gone into my little boy’s arms and will pass through his kidneys. But they will help him fight this villain.
I hate that this has happened so fast; this is only the beginning of day 3 of even realizing that he was sick at all. But it is a blessing he hasn’t suffered more.
I hate all the tubes and wires attached in various ways to his little body. But they are monitoring him and providing access to give meds without having to poke him over and over.
I hate ignoring phone calls from friends because I just cant talk right now, knowing that the blessing of love and friendship behind those calls is going to help carry us through this dark valley.
Is it ok to hate a blessing? Perhaps I don’t hate these blessings. I think I hate needing to receive them. Is there a blessing in having to go through this?
--- --- ---
Friday proved to be a day of hope. Derek’s white blood count continued to drop throughout the day. As his potassium levels climbed, they gave him a medication to force it out of the bloodstream so it would be absorbed by the cells, thus reducing the risks to his heart. The miracle was that even though they were giving him so many fluids, the mass in his chest (which they believe to be grossly enlarged lymph nodes that have fused together) did not swell, further affecting his breathing. The rest of his electrolytes stayed pretty normal, and by the end of the day, his potassium was near normal as well. He was talking, smiling, and even laughing when his cousins came to visit. It was music to our ears and hearts.
Throughout the day we received so much encouragement from visitors. We also heard the news that friends were getting together to pray at our church Friday evening. We were totally blown away by the thought that so many people would leave their homes and dinners on a Friday evening after a busy work week and meet to pray for our precious son!
We have not had to worry for one minute about the care for Kristen. Wonderful friends have taken her under their wings and provided for her as their own children. When we have picked her up, she has been totally happy and unstressed, eagerly telling us all the fun things she did. Not having to worry about her care has been a huge blessing. Food has shown up at meal times, all orchestrated by wonderful people at Azure Hills Church. Cafeteria food does not hold a candle to your cooking!
While there is still a long dark valley ahead through which we must pass, all of this has been a river of love and support that is carrying us along. Thank you! Thank you!
Current Update
I will write more of what happened Friday later, but I just wanted to let everybody know that Derek is doing so much better. As of 4:00p.m. yesterday (Friday) his white count was down to 38,000 and the risk of stroke is minimal. His potassium level is normal. He is still struggling with his oxygen saturation levels at times, but it has not been critical. He is talking, smiling and laughing -- a huge change from Thursday and Friday. They will likely move him from PICU down to the oncology ward today.
We have had such an overwhelming outpouring of love and support! Thank you! Thank you! Thank you! We are being carried along on the tidal wave of your love and prayers. You have no idea what this means to us. It's surreal being on the receiving end, but we are eternally grateful to you all.
We have had such an overwhelming outpouring of love and support! Thank you! Thank you! Thank you! We are being carried along on the tidal wave of your love and prayers. You have no idea what this means to us. It's surreal being on the receiving end, but we are eternally grateful to you all.
Whiplash (written early Friday morning, 9/9/11)
It's been a very long time since I have used my blog. I guess FB kind of took over, but I think this may be the best way to keep those interested updated of current happenings.
I have severe whiplash - figurative that is. I've gone from 0 to 120 mph in just about 6 seconds, or so it seems. Two days ago I was cruising through a busy, full, contented, albeit stressful-at-times life of a mommy. Then I was hit from behind. I went from having a healthy active little boy who was enjoying swimming lessons and attending his first "big kids" science class to a little boy fighting for his very life. The diagnosis is what hit us from behind and sent us flying: T-cell acute lymphocytic leukemia.
I owe the fact that I'm not planning his funeral today to a very dear friend and physician who advised me to take him to the ER for a number of seemingly unrelated and rather sudden symptoms on Wednesday afternoon and evening (Sept. 7, 2011). His symptoms: a puffy face when awakening from sleep, shallow breathing, and a distended abdomen. Fortunately I heeded his advice. Had I simply called the 24 hour insurance hotline nurse, she likely would have recommended that I wait and take him to the pediatrician in the morning. That delay would have meant disaster.
But as we checked in at the front desk at the Corona ER at 900 p.m. Thursday night, the lady asked which one of us was being seen. When she saw Derek, she looked surprised as though he did not look sick enough to come to the ER, and he didn't. As we sat in the waiting room, his breathing problems dissipated, and we wondered if indeed we were imagining things and were just there for an upset tummy that would resolve itself with the next bowel movement. The triage nurse took down the symptoms and checked his vitals. We saw a resident, then an internist. As the internist felt Derek's abdomen, he quickly zeroed in on the very spot Derek had indicated as the site of his tummy ache. Perhaps I wasn't imagining things after all. Perhaps it was what my friend had feared: a bowel obstruction. (Oh if only that's what it could have been. How my perspective has changed.)
The doctor ordered blood tests, an x-ray, and a ct scan. After they did the second blood draw, Derek fainted. That was what got everyone taking us seriously. He immediately got a bed in ER and started getting the attention he needed. As Derek went in for the ct scan just after midnight, the results of the blood tests came back. The white blood cell count was unbelievably high - 245,000. Normal is 5,000-10,000. The doctor knew there was no infection or obstruction. We were likely looking at leukemia. He contacted Loma Linda University Medical Center Children’s Hospital who strongly urged him to transfer Derek to them immediately. We didn’t realize it at the time, but after that phone call, the LLUMCCH oncologist, Joan Morris, flew into action. She arranged for tests and treatments before Derek ever arrived so that when he did, he would receive immediate, intense care. She even sent two of her personnel in the ambulance to personally escort him. The danger, of which we were ignorant at the time, was that he would have a stroke as a result of such a high white count. There weren’t enough red blood cells to carry oxygen to his brain, heart, and lungs. The red blood cells were being crowded out by the white blood cells, hence the difficulty breathing. The risk of stroke or other vital organ failure would be present until the white count could be reduced, and that was Dr. Morris’s top priority. From the time she got the call, she treated Derek as though he were the only patient she had. Her attention to detail and her ability to organize and carry out all the procedures and care from so many specialty teams have been utterly amazing, and we are eternally grateful. At 5:00 a.m. today, Thursday, they were finally able to transfer him to LLUMC where they put him in Pediatric ICU. Dr Morris and her team were waiting for him.
Today has been completely overwhelming. We have filled a bathtub with our tears. It has been a constant barrage of information, concern, and decision making (which always involves mountains of paperwork and signatures.) So many critical things depended on other complicating factors that we felt as though we were walking on the edge of a razor blade -- extremely painful, but with devastating results if we fell off either side.
The x-ray and ct scan were of the abdomen because we were still thinking it was a GI problem. But the x-ray showed part of a mass surrounding his heart. That needed to be explored more. By late morning, he had a second ct scan of his chest. It showed the mass surrounding his heart and impinging on his trachea – another reason Derek was having trouble breathing.
Dr. Morris’ first priority was to get him hooked up to a machine which would remove some white cells from his blood. That would necessitate putting a line in his femoral artery in his leg. They also needed to obtain a bone marrow sample to determine conclusively what type of leukemia Derek had. They needed to perform a spinal tap to see if the disease had spread to his spinal fluid. While they did the tap, they wanted to insert a dose of chemo into his spine to begin the white cell destruction. In addition, they needed a safer, longer lasting access to his veins rather than a regular IV that likely lasts only a few days. They had to put in a special PICC line in his upper arm. All of these procedures are painful, but they were worried that if they sedated him, the pressure of the mass surrounding his heart would collapse his lungs. But they couldn’t put a tube in to help him breathe because removing the tube after the procedures could cause the trachea to collapse. So at first they were afraid he would have to have all of these procedures with just local anesthesia, and Derek would be awake the whole time. Nobody liked that idea, but they could not intubate him because of the risks. After discussing options with the anesthesia team, they decided to sedate him without intubating him. It was a rather precarious situation. We were grateful that Derek would not have to be awake for those procedures. The anesthesia team was prepared for an emergency, should one arise. They allowed me to accompany me him to OR and stay with him until he fell asleep. The anesthesia team were fantastic with him. They had him talking about his pets as he drifted off. Watching him go to sleep and then leaving the room was excruciating.
The procedures started just about 3:00 p.m. Then the waiting began. We were updated as the procedures were completed, but the intervening wait time seemed to take forever. In reality, it was about two hours. All the procedures went perfectly and he did well with the anesthesia. Praise God! Vince and I met him in recovery and accompanied him back to PICU.
By 7:00 p.m. they had him hooked up to the pharesis machine which would begin removing white blood cells from his blood. During this time they also performed an echocardiogram in preparation for the first round of chemotherapy, which Dr. Morris wanted to give immediately following pharesis. Again, the potential for disaster was ever present, but the pharesis nurse was fantastic and so attentive to every detail. The danger this time was that in removing so much fluid from him, his blood pressure would drop and he again would be at risk of brain damage. But she couldn’t give too much fluid for fear of overwhelming his kidneys. To complicate things further, the latest lab results showed that his potassium levels were way to high which could cause heart arrhythmia and/or damage. They had to give him Lasix to help him rid his body of this excess potassium. This meant that more fluid would leave his body, and the need to monitor input and outflow was intensified. The razor blade again. Every time he urinated, his blood pressure dropped and she had to quickly give him more IV fluids. Fortunately, he could now take water by mouth.
By 11:30 the pharesis was completed. Derek’s white count was down to 111,000. They had removed half of his white blood cells. The chemo they had given him in his spine earlier was also beginning to break down the white cells. He is not out of the woods yet regarding potential for stroke, but things are moving in the right direction.
Just after midnight, the nurse came in to administer his first round of chemo. As of now, 12:30 a.m. Friday morning, they are finished. Derek is asleep. They are monitoring his potassium levels closely.
Just 27 hours after entering the doors of the ER in Corona, look where we are now! I have whiplash.
I have severe whiplash - figurative that is. I've gone from 0 to 120 mph in just about 6 seconds, or so it seems. Two days ago I was cruising through a busy, full, contented, albeit stressful-at-times life of a mommy. Then I was hit from behind. I went from having a healthy active little boy who was enjoying swimming lessons and attending his first "big kids" science class to a little boy fighting for his very life. The diagnosis is what hit us from behind and sent us flying: T-cell acute lymphocytic leukemia.
I owe the fact that I'm not planning his funeral today to a very dear friend and physician who advised me to take him to the ER for a number of seemingly unrelated and rather sudden symptoms on Wednesday afternoon and evening (Sept. 7, 2011). His symptoms: a puffy face when awakening from sleep, shallow breathing, and a distended abdomen. Fortunately I heeded his advice. Had I simply called the 24 hour insurance hotline nurse, she likely would have recommended that I wait and take him to the pediatrician in the morning. That delay would have meant disaster.
But as we checked in at the front desk at the Corona ER at 900 p.m. Thursday night, the lady asked which one of us was being seen. When she saw Derek, she looked surprised as though he did not look sick enough to come to the ER, and he didn't. As we sat in the waiting room, his breathing problems dissipated, and we wondered if indeed we were imagining things and were just there for an upset tummy that would resolve itself with the next bowel movement. The triage nurse took down the symptoms and checked his vitals. We saw a resident, then an internist. As the internist felt Derek's abdomen, he quickly zeroed in on the very spot Derek had indicated as the site of his tummy ache. Perhaps I wasn't imagining things after all. Perhaps it was what my friend had feared: a bowel obstruction. (Oh if only that's what it could have been. How my perspective has changed.)
The doctor ordered blood tests, an x-ray, and a ct scan. After they did the second blood draw, Derek fainted. That was what got everyone taking us seriously. He immediately got a bed in ER and started getting the attention he needed. As Derek went in for the ct scan just after midnight, the results of the blood tests came back. The white blood cell count was unbelievably high - 245,000. Normal is 5,000-10,000. The doctor knew there was no infection or obstruction. We were likely looking at leukemia. He contacted Loma Linda University Medical Center Children’s Hospital who strongly urged him to transfer Derek to them immediately. We didn’t realize it at the time, but after that phone call, the LLUMCCH oncologist, Joan Morris, flew into action. She arranged for tests and treatments before Derek ever arrived so that when he did, he would receive immediate, intense care. She even sent two of her personnel in the ambulance to personally escort him. The danger, of which we were ignorant at the time, was that he would have a stroke as a result of such a high white count. There weren’t enough red blood cells to carry oxygen to his brain, heart, and lungs. The red blood cells were being crowded out by the white blood cells, hence the difficulty breathing. The risk of stroke or other vital organ failure would be present until the white count could be reduced, and that was Dr. Morris’s top priority. From the time she got the call, she treated Derek as though he were the only patient she had. Her attention to detail and her ability to organize and carry out all the procedures and care from so many specialty teams have been utterly amazing, and we are eternally grateful. At 5:00 a.m. today, Thursday, they were finally able to transfer him to LLUMC where they put him in Pediatric ICU. Dr Morris and her team were waiting for him.
Today has been completely overwhelming. We have filled a bathtub with our tears. It has been a constant barrage of information, concern, and decision making (which always involves mountains of paperwork and signatures.) So many critical things depended on other complicating factors that we felt as though we were walking on the edge of a razor blade -- extremely painful, but with devastating results if we fell off either side.
The x-ray and ct scan were of the abdomen because we were still thinking it was a GI problem. But the x-ray showed part of a mass surrounding his heart. That needed to be explored more. By late morning, he had a second ct scan of his chest. It showed the mass surrounding his heart and impinging on his trachea – another reason Derek was having trouble breathing.
Dr. Morris’ first priority was to get him hooked up to a machine which would remove some white cells from his blood. That would necessitate putting a line in his femoral artery in his leg. They also needed to obtain a bone marrow sample to determine conclusively what type of leukemia Derek had. They needed to perform a spinal tap to see if the disease had spread to his spinal fluid. While they did the tap, they wanted to insert a dose of chemo into his spine to begin the white cell destruction. In addition, they needed a safer, longer lasting access to his veins rather than a regular IV that likely lasts only a few days. They had to put in a special PICC line in his upper arm. All of these procedures are painful, but they were worried that if they sedated him, the pressure of the mass surrounding his heart would collapse his lungs. But they couldn’t put a tube in to help him breathe because removing the tube after the procedures could cause the trachea to collapse. So at first they were afraid he would have to have all of these procedures with just local anesthesia, and Derek would be awake the whole time. Nobody liked that idea, but they could not intubate him because of the risks. After discussing options with the anesthesia team, they decided to sedate him without intubating him. It was a rather precarious situation. We were grateful that Derek would not have to be awake for those procedures. The anesthesia team was prepared for an emergency, should one arise. They allowed me to accompany me him to OR and stay with him until he fell asleep. The anesthesia team were fantastic with him. They had him talking about his pets as he drifted off. Watching him go to sleep and then leaving the room was excruciating.
The procedures started just about 3:00 p.m. Then the waiting began. We were updated as the procedures were completed, but the intervening wait time seemed to take forever. In reality, it was about two hours. All the procedures went perfectly and he did well with the anesthesia. Praise God! Vince and I met him in recovery and accompanied him back to PICU.
By 7:00 p.m. they had him hooked up to the pharesis machine which would begin removing white blood cells from his blood. During this time they also performed an echocardiogram in preparation for the first round of chemotherapy, which Dr. Morris wanted to give immediately following pharesis. Again, the potential for disaster was ever present, but the pharesis nurse was fantastic and so attentive to every detail. The danger this time was that in removing so much fluid from him, his blood pressure would drop and he again would be at risk of brain damage. But she couldn’t give too much fluid for fear of overwhelming his kidneys. To complicate things further, the latest lab results showed that his potassium levels were way to high which could cause heart arrhythmia and/or damage. They had to give him Lasix to help him rid his body of this excess potassium. This meant that more fluid would leave his body, and the need to monitor input and outflow was intensified. The razor blade again. Every time he urinated, his blood pressure dropped and she had to quickly give him more IV fluids. Fortunately, he could now take water by mouth.
By 11:30 the pharesis was completed. Derek’s white count was down to 111,000. They had removed half of his white blood cells. The chemo they had given him in his spine earlier was also beginning to break down the white cells. He is not out of the woods yet regarding potential for stroke, but things are moving in the right direction.
Just after midnight, the nurse came in to administer his first round of chemo. As of now, 12:30 a.m. Friday morning, they are finished. Derek is asleep. They are monitoring his potassium levels closely.
Just 27 hours after entering the doors of the ER in Corona, look where we are now! I have whiplash.
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