tag:blogger.com,1999:blog-75631607449527532962024-03-05T14:56:01.249-08:00Jonathan's Journey Our life with diagnosed Diffuse Large B cell LymphomaDawnhttp://www.blogger.com/profile/05658868926422109144noreply@blogger.comBlogger80125tag:blogger.com,1999:blog-7563160744952753296.post-7879795477883786132016-05-12T19:32:00.000-07:002016-05-12T19:32:17.622-07:00Band Concerts and Other Normal ThingsTonight was J's 6th grade band concert. He plays the alto saxophone. It was a typical middle school band concert. They managed to play together. There were only a few times when the band was supposed to be silent, but one person took an impromptu solo. There was a fun song played by all three grades about the revenge of the dust bunnies, with a live vacuum cleaner at the end. They performed in their gym and had the performing band in the center, and the two sitting bands were in the back of the room seated in chairs. J fidgeted like a 6th grader. He whispered to classmates while other bands were performing. He couldn't stop talking about how much fun the evening was.<br />
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Earlier today he went to his check-up with the oncologist. This was his check-up one year out from treatment. The actual anniversary of his last treatment was on Tuesday of this week. This is a happy milestone. If this type of lymphoma recurs, it recurs early, and rarely after a year. He will get scanned at his next appointment in June. We hope to again see that all is well.<br />
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After his appointment we went out for lunch at Buffalo Wild Wings. He had a pulled pork sandwich. He tried a wing that was too hot for his taste and he had already ran out of water. Poor guy. The waitress was pretty quick, but I had to give up some of my water to him before she returned with more. We didn't have time for dessert there, but tonight after the concert we enjoyed peanut butter bars, one of his favorite desserts (as well as one of mine). Yum. Seriously delicious.<br />
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He reads books all the time. Before school while eating his breakfast. The entire drive to and from the children's hospital. If he's not reading, there is a good chance he is building things with Legos or trying to sneak some screen time on Clash of Clans. All in all, if you didn't know his story, you would never have reason to suspect that he was hospital bound a year ago being treated for lymphoma. <br />
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We often think of all the help we received from family, friends, and complete strangers. All the meals, cards, and prayers offered on his behalf. As stressful as it was, it was nice to see all the good that people are capable of, if we just give them an opportunity to help. One of my more treasured lessons is that many people truly want to help, and I should let them. Life isn't really about how well I can manage things on my own anyway. <br />
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<br />Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com0tag:blogger.com,1999:blog-7563160744952753296.post-61919096337762449182016-03-03T14:11:00.001-08:002016-03-03T14:11:36.424-08:00Quick UpdateJ had a long day at the hospital getting CT scans, labs, and follow-up visit. The long and short of it is that the lymphoma remains in remission. <br />
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I didn't work today so I accompanied him through his appointments. <br />
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It was interesting to sit in the waiting room in a hospital where I don't work, where none of the staff know I am a radiologist. Very slow. Nice people, but 30 minute wait before they finally brought out his contrast that he had to drink (their oral contrast is tastier than any place I have worked). <br />
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There was a delay with the scan itself, mainly because I was causing trouble:) J has had blood in his urine and we saw urology and had decided we would do a scan through the kidneys before giving contrast through his veins so we could get a clear picture of how many kidney stones, if any, were present (the kidneys clear contrast and can hide kidney stones). But this is a children's hospital and it takes some convincing to do anything that causes more radiation exposure to a kid, and the order had not been placed properly to get the images we needed. The radiologist the CT technologists worked with is a friend of mine, and he agreed with how I wanted to scan J once I explained the story, but it still added about 30 minutes before we were in agreement on a plan and had the corrected order (agreement was easy, took time to get a new order). <br />
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We went to Hem/Onc to see if we could get his blood drawn through the IV they had to place. It was lunch time, but they took care of it right away. Awesome. No wait.<br />
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We had a quick lunch and then reviewed the CT scan with my friend and then went and had the appointment with the Nurse Practioner. All is good with the lymphoma. He has several very small kidneys stones. The biggest is 2 mm. Not much to do about those. Just be prepared to treat symptoms if he ever passes the stones, but they should pass without help.<br />
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One more CT scan in 3 months and then we can start looking every 6 months instead of every 3 months. Making progress!Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com1tag:blogger.com,1999:blog-7563160744952753296.post-72216363740186139392016-02-10T19:38:00.002-08:002016-02-10T19:38:21.768-08:00RememberingAnniversaries seem to assume a celebration of sorts. But people who have lost or have been hurt also know there are sad or somber anniversaries. It has been a year (Feb 11) since we found J's lymphoma. Talking with J tonight he said, "It doesn't seem like it could have been a year since that all happened, it doesn't seem like it has been that long." I reminded him he was in a bit of a daze during a few months of treatment. He chuckled a bit and said, "Yeah". I asked him earlier what he thinks about regarding his experience over the last year. He said he kind of prefers not to think about it at all. <br />
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Mom and I have talked a bit about this last year, particularly over the last week. Her strong memory is all the meals and prayers and gifts and cards and notes that J and our family received. It was a stressful time and it was so nice that we did not have to go through it alone. Our burdens are truly made lighter when shared with others, and with all the community help, I can hardly remember the weight of the burden. One of the most touching moments of support came at J's 5th grade graduation/awards day. The teachers called each of their class members one by one to receive their graduation certificate. There were little pockets of cheers here and there from groups of friends. When J's name was called a cheer broke out from the entire school. It was so touching, and even now one of those touching moments that makes me appreciative of the kindness that can be found in people all around us. Why do we spend so much effort being indifferent to the people we live around? Why don't we always show this kind of love and kindness for everyone around us? Maybe you do. I definitely can improve.<br />
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I was looking over some of the messages I had sent the day we found the mass. I had texted a friend letting him know I had put my signed contract for my new job in the mail. He was moving away a week later and I told him we were going to wait until their move to announce our planned move because I didn't want to detract from the glory of their departure. How ironic that just a few hours later our news became such big news. Mom had texted a friend about getting J together to hang out with one of his friends that afternoon, but that was a plan that was disrupted by the pain he experienced in the afternoon. The thing that struck me is how suddenly things can happen that change your life, change your routine, may even change what you eat and where you sleep. <br />
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J has had a few appointments since the last post. He is doing well. He has a tiny amount of blood in his urine. With the next CT scan next month we're going to try to look particularly close for any kidney stones that may still be hanging out and then visit urology again. If this CT scan remains good regarding the lymphoma, then there will be another scan beginning of June. If that remains good, he will have remained in remission for one year and they will start scanning only every 6 months. Wahoo.<br />
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In the meantime, J is doing well in 6th grade. He is participating in the middle school play. They are doing Willy Wonka, Jr. and he is an Oompa Loompa. That was the part he wanted. Go figure. His grades have been good. Sometimes chemotherapy can significantly impact ability to focus and school becomes hard. Maybe it's not even the chemotherapy, but just the memory of the experience. Either way, any impact it may have had has not dropped his grades. We are very grateful with how well things are right now.Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com1tag:blogger.com,1999:blog-7563160744952753296.post-53419713072085857642015-12-01T04:31:00.001-08:002015-12-01T04:31:34.892-08:00So Much To Be Thankful ForI had meant to post on Thanksgiving, but I also knew we were just a couple days away from another follow-up appointment with CT scans. 6 months later, all clear. J took his last dose of antibiotics that he was taking as a precaution against certain infections until his body had recovered enough from the chemotherapy. He no longer takes any regular medications. He surprised us with the last doses by swallowing his pills with a drink of water. He has come so far from our crazy fights on how to get him to swallow pills. <br />
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I'm grateful he lives a normal life now. He is going on a campout this weekend with the scouts, although the leaders have admitted it is "comfort camping" in heated cabins, but hey, he's going. He is doing well in school with no obvious difficulties studying and learning. He auditioned for the school play. He wanted to be an oompa loompa in Willy Wonka, Jr. He loves playing video games. He gets mad at his little siblings (I said normal life, not perfect life). He isn't known as the kid with cancer or the sick kid. He keeps his own identity that includes having just recovered from treatment for lymphoma. He misses his friends that we left behind when we moved. He likes to stay up late reading and has trouble waking up in the morning.<br />
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Some things I am once again thankful for that this experience made me aware of.<br />
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The compassion in humanity and the opportunity to see the good in so many concerned friends, family, and strangers<br />
Zofran and Morphine (without these J would have been far more miserable and it would have been harder to sit and watch a suffering child)<br />
Brilliant people who developed chemotherapy<br />
Medical Imaging<br />
Antibioitics<br />
Oncologists<br />
Nurses who put up with people whose behavior may be at their worst (probably true of children and adults as patients and the family of patients)<br />
The comforting power of prayer<br />
The timing. We lived 5 minutes from the hospital and he was treated where I was working. We were around so many friends. Things would be much different here.Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com0tag:blogger.com,1999:blog-7563160744952753296.post-50629792161416189282015-09-27T18:22:00.000-07:002015-09-27T18:22:09.457-07:00Happy Birthday!!J had a marathon of tests a couple weeks ago. He had his CT scan, which showed no new disease. Good news! He had an echocardiogram to make sure the heart didn't get injured too much from the chemotherapy. The heart is still working well. He had a host of labs that reportedly are fine. I couldn't find the kidney stones anymore on the CT scan. So nice to repeatedly have good news. <a name='more'></a> <div>
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September 21 was his 12th birthday. Once we knew the diagnosis was lymphoma, a very treatable disease, there wasn't much concern about whether or not he would even see his 12th birthday, but nonetheless, after that ordeal, it is nice to celebrate a normal life event again. For some strange reason, he doesn't like chocolate, and he's not fond of cold. His birthday "cake" was lemon meringue pie. No ice cream. Definitely didn't inherit his tastes from his parents!</div>
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In our church, turning 12 is an important part of life. We have a primary program that provides classes to children from 3-12 years of age. When you turn 12 you can graduate from primary and move on to the Young Men and Young Women programs, which is for 12 year olds through high school graduation. Additionally, the boys have the opportunity to receive the priesthood and take on responsibilities within the church. Particularly, the 12 year old boys are able to assist with the administration of the sacrament in our weekly worship services. Today he was presented before the church congregation to be ordained. Afterward, I was able to perform the ordination. The priesthood is really an opportunity to learn to serve others. If there is one thing I hope J can learn from this ordeal, it is how to see the needs of others and how to offer a hand, or at least show love and kindness. Everyone has something that makes them suffer. Some are dramatic and very public, some are more private (but maybe just as dramatic). The world would be a better a place if we took time to help someone else with their troubles. It is still overwhelming to consider all the support that J received from friend and stranger alike. Thank you all.</div>
Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com3tag:blogger.com,1999:blog-7563160744952753296.post-80471702722276728972015-08-31T19:31:00.000-07:002015-09-01T19:09:51.956-07:00A New LifeMom and J went to meet his new oncologist a week or two ago. It is very interesting how God works in our lives. Prior to the diagnosis we were contemplating switching jobs and moving. I had already interviewed for the position and was given a job offer. I signed the contract and Mom placed the contract in the mail the morning we found his mass. I had already determined to start with the new job in mid-August. Then we find the mass. That's the kind of discovery that can destroy plans (and it did disrupt several plans). But here is the beauty of how it worked, we were able to have J treated with his long inpatient treatments in a hospital that was two minutes from our house. I worked at primarily at one hospital, the same where he was treated. It wasn't an easy four months, but it ended up being only four months. We were able to follow through with our fun summer plans, and add some new activities. I was able to start work in August as planned. It's hard to imagine coincidence working so beautifully. We count it as blessings from God.<br />
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The new oncologist works in a children's hospital. The hospital is 30 minutes from our home, and is downtown in the city where we now live. We have lived in a very rural place for 7 of the last 8 years, and the thought of Mom taking him downtown to his appointment was daunting. They arrived without incident and went into the hospital. It's massive. They went to the elevator only to discover they were supposed to check in at security and needed to have name badges everywhere they went. They were on the 7th or 8th floor of the clinic portion of the hospital. The appointment itself was fine. The new oncologist had an interesting story to hear. <br />
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The working plan now is to re-check all the labs and get CT scans and check a new echocardiogram to make sure his heart is still working as well as it should.<br />
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Adjusting to new schools, a new neighborhood, and a new church congregation is now the order of the day. J has preferred to not be known as the kid with cancer and has not been open about his last 6 months. We were at the park the other day with some new friends. The father in the family had just had shoulder surgery and had a large brace with a big support pad (hard to hide that he had surgery). J started to ask him about his surgery and then shared that he had surgery before. He was asked what type of surgery. J said, "I had my appendix out". I was dying wanting to share the whole story, but this is now J's history and I will help make sure he is not known for reasons he doesn't want. We've realized it's futile to completely keep it from becoming common knowledge. J's younger sisters have a hard time understanding why he doesn't want everyone to know and have shared several times. Mom had already made some friends in the area that followed along with the story. <br />
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We have a trampoline, a basketball hoop, and swing set with our new home. It has been nice to see J come in after playing with his siblings and the neighbors. His hair is matted down, covered in sweat. Just how kids should come in after playing. When we were at the park, he played a game of ultimate Frisbee. He was at the younger end of the group playing, but he still played well and played hard. So happy to be at this point. Definitely feels like a new life.<br />
<br />Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com2tag:blogger.com,1999:blog-7563160744952753296.post-74689719171400944242015-08-11T20:28:00.002-07:002015-08-11T20:28:17.990-07:00Six monthsIt was six months ago today that we discovered the lymphoma. By 11 pm we had already found the mass on ultrasound, been admitted through the emergency department, obtained an MRI, and were admitted to the Children's Hospital, hoping to have surgery the next morning and discover exactly what we were dealing with. I remember doubting that it could be anything benign and hoping it would just be lymphoma because the alternatives would have been worse. <br />
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So much has happened since that day. We didn't even need the lymphoma to put our lives in turmoil as we were already planning on leaving my job and starting a new job. We just barely moved to our new home and immediately left on vacation with some friends. Our house is not even close to unpacked. The kids are registered for their new school, but J and his older sister still need to get their classes scheduled. <br />
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J has a full head of hair growing again. It's very thick and has a bit of curl to it. Mom thinks it's a little bit softer, not as coarse as it was before. I can't tell the difference. <br />
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J recently went to a special needs camp for children with cancer. He was allowed to take one sibling as a guest, so his older sister went with him. They had a blast and have already planned the next 10 years of camp attendance. They are able to attend 5 years and then they could apply to be a camp counselor for the one week camp. They had all sorts of activities and played pranks on each other. J was given "The Most Inquisitive" Award. That captures him well.<br />
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We will have his first appointment with his new oncologist next week. From a medical standpoint, they will want to know what symptoms he had that led to the discovery of the lymphoma, specifics about the type of lymphoma, treatment, any noteworthy complications, and treatment response assessment. We boil the stories down to just the basics. Enough to make treatment decisions. But there is such an amazing story to accompany his basic story, as there likely is with every patient. It's a shame we don't have enough time to know another's complete story.<br />
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Right now we are considering his treatment successful with a complete response. We wouldn't necessarily jump to the "cured" word at this point, but things look really good today.Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com0tag:blogger.com,1999:blog-7563160744952753296.post-7926358521007181782015-06-29T20:43:00.000-07:002015-06-29T20:43:02.358-07:00The Final SurgeryThe medication port came out today. The removal was pretty straight forward. J went in with confidence. He is used to the PACU. He knows what to expect. He has learned (and doctors are learning as well) that a bit of distraction helps pass the time and ease anxieties. We had placed the EMLA cream over the top of his port, just in case they would choose to access it, to begin giving him anesthesia to put him to sleep. He preferred that plan over the idea of getting a peripheral IV. However, the anesthesiologist suggested using gas at first and then placing their IV. J can be pretty confident when he knows the rules of the game, but when you change how things are done, he gets a little anxious. His cure for anxiety, his Kindle. A few games. A good book. Oh, and Studio C on Mom's phone. These are adequate distractions that helped him get through the pre-surgery waiting. <br />
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He woke up a very short time later, confused as to whether they had put him to sleep for surgery yet. His recovery was pretty simple, except when it came time for him to get his IV pulled. He strongly dislikes tape, and I set him to task of removing the tape holding his IV line in place. I think he set a record with 20 minutes to remove the tape. <br />
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He gained a souvenir.<br />
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This is the reservoir from his medication port. The catheter was not given to J. All of this hides underneath the skin. They poke through the skin with the needle into the center portion of the port. So nice that someone came up with the port, but so nice that we are finished with it.</div>
Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com4tag:blogger.com,1999:blog-7563160744952753296.post-63415444723094832592015-06-16T19:56:00.002-07:002015-06-16T19:56:23.347-07:00PET Scan Results and a New PlanThe biggest story regarding the PET scan was with the squirrel that delayed the scan by one day. The poor squirrel bit off more than it could choose with the high voltage lines. I have a picture, but I'll spare you.<a name='more'></a><div>
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We prepped J's arm with EMLA cream, which is basically topical anesthetic in a lotion form. I was worried that it may make the vessels constrict and not be a good target for gaining access, but I was wrong and he was easily accessed. He hopped on the bed without complaint, made himself comfortable (or directed the techs how to make him comfortable) and listened to a medley of classical music during the scan.</div>
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The results: Disclaimer, I may have looked at the scan, which may not have been formally read yet. But I don't think the final report will be much different.</div>
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Lymph nodes: The initial lymph nodes were large, probably like an orange, and had lots of activity. He had three-ish of them. The nodes in the pelvis aren't seen anymore. Another lymph node higher up has shrunk down and is now about the size of a peanut and has no activity associated with it (dead lymphoma). It is a little bit smaller than the scan in the middle of treatment. Good news.</div>
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Questionable finding: Last time there was the area of activity that I thought was left over inflammation from the abscess. It's still there. It's a little bit smaller than before, but still has activity. I would have been happier if the activity went away, but I still don't think it's active lymphoma and it's getting smaller. I think I have the oncologists satisfied that we can watch and see what it looks like in three months.</div>
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There weren't any new lymph nodes!!!</div>
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He still has some small kidney stones. I guess there is a little bit of bad news.</div>
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The plan from here: </div>
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Remove the medication port sometime in the next several weeks.</div>
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Continue taking pills meant to dissolve the kidney stones (he is excited about that).</div>
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Continue taking an antibiotic over the next several months to prevent certain lung infections.</div>
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Go to a week-long summer camp designed for kids with cancer (active or treated) in July. He will get his next check up while at the camp, which is supervised and partly organized by the three oncologists. He gets to take his older sister with him as a companion.</div>
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The oncologists will write up a summary of his care and deliver a copy to us and help us find a new oncologist for when we move in July.</div>
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Continue to get stronger and return to his old self. </div>
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He gained 7 pounds since he was in treatment. His hair is growing back, looks like a military haircut right now. Today life looks really good.</div>
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Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com1tag:blogger.com,1999:blog-7563160744952753296.post-712829642036011702015-06-14T12:52:00.003-07:002015-06-14T12:52:35.703-07:00AnticipationTomorrow is the first of many follow-up scans. J will get a PET scan early in the morning, and then we will go to clinic to see what the results are and what the plan is from there (hopefully surgery referral to get the medication port removed). He has been doing pretty well. His only problems right now are endurance problems, and perhaps cold sensitivity in his teeth (although that's pretty normal, but it's new for him). He finished the school year and is his old self for the most part.<br />
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Today I had a moment of dread considering the dangerous what ifs. What if that spot that was a question mark nearly two months ago has not gone away and surgery is recommended and something bad happens at surgery? What if there are new lymph nodes and we need a biopsy and then start a new chemotherapy regimen? What if it comes back and we can never get it under control again? All of these questions go against the odds, which all point to him having an unexciting scan tomorrow. I also know, and will happily tell others, that no good comes in worrying about the possibilities. If I get worked up over the possibilities, it won't change what the reality is going to show. But those nagging, doubtful thoughts come and invade my peace. A day from now, we'll know the answers.Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com1tag:blogger.com,1999:blog-7563160744952753296.post-61621170405464252522015-06-07T19:30:00.000-07:002015-06-07T19:30:03.430-07:00A Week of FunIt's so odd to have a week without any doctors' visits (orthodontist, yes, twice, but no medical doctors). No labs. Wish we could say no medicines, but that's not quite true. Just normal end-of-the-school year activities. <br />
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Friday I had the day off from work and J had the 5th grade field trip to a nearby amusement park. He and I were a group. When we arrived at the park, the people in the park were mainly from his school, but he would get very excited whenever he would see somebody from school. We met up with a few friends for some rides and then went our own way and rode some of the rides J was excited about. The first ride was one of those rides where a ship rocks back and forth to great heights. We were the only two people on the ride. I suggested he ride on one side of the ship, and I ride opposite him. He wouldn't have any of it. In fact, he decided he wasn't quite ready for this ride and was going to leave. The worker and I talked him into staying, but he wanted to sit right in the middle of the ship so he wouldn't go as high. We did it. J said he didn't look up until his body was used to the feeling. We rode again immediately after and I talked him into being at the end of the ship so we could go higher. He agreed, but still wouldn't look up until his body was used to it. Made me chuckle a bit. Overall it was a fun trip.<br />
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Immediately after the field trip, it was time to get all the food together for the BBQ. I had started smoking pork the day before and was cooking all through the night. I was also cooking while at the amusement park (I love smoking meat). It's always a bit chaotic in the hour or two before a big BBQ, but we managed to get everything packed. Mom managed to get a large pavilion at a beautiful nature preserve nearby. We managed to get the food ready, and then people started coming. It was a nice steady stream of people for an hour and a half or so, but some stragglers even three hours late. I don't know if it means he is still recovering, or if it means that he's a normal kid, but J was tired. It was a bit warm and the bugs were out. He became frustrated and spent a fair amount of time in the car with all the doors open, or playing games on whoever's electronic device he could get his hands on. In spite all that, it was a great evening. Thanks again to so many who have helped over the past 4 months. Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com0tag:blogger.com,1999:blog-7563160744952753296.post-29855351707532578802015-05-28T19:15:00.001-07:002015-05-28T19:15:29.030-07:00A Simple SurgeryToday was the first day we experienced same day surgery. Highly recommend it over the inpatient, prolonged-stay version of surgery. Expectations are important in allowing it to be a satisfactory experience.<br />
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First. Don't expect too much from the scheduling. A few days ago we received notification that surgery would be Thursday, May 28. What time? Oh, nobody knows. We were promised a call the day before surgery between 1 and 7 pm. At 6 pm Mom is getting frustrated that we haven't been notified yet, but they are still in their window when they promised a call. The call comes about 6:45 pm. J is to report to surgery at 1:30 pm. Operation begins at 2:30 pm. Nothing to eat after midnight. Poor little boy that can't eat all day.<br />
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Two. Don't expect the schedule to represent reality. Somehow Mom had it in her head that reporting time was 1:45, so we ended up being a few minutes late. Ends up not being a problem. One of the patients before us was REALLY late, so the whole day was pushed back. I think he finally was taken back to the operating room about one hour after he was supposed to. And that's pretty good for the OR.<br />
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Three. Expect to take care of yourself after surgery. If it's same day surgery, then you're on your own that night anyway, and someone expects that you can handle your own care. When we were done in the PACU (post-anesthesia care unit), J dressed himself and walked the half mile to my car. No need for a wheelchair. No escort to the door. No problem. He did great.<br />
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Four. Expect it to be like surgery in every other way. About 20 people will ask your name, date of birth, what you're here for. Allergies? When did you eat last? In spite all the questioning, nobody can answer the critical question, "When do we start surgery?" <br />
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The surgery was successful. They took the stent out and found one stone in the ureter. It fell apart when they tried to handle it. The urologist is convinced it's a uric acid stone. Two of the oncologists were checking on the patient next to us in the PACU and stopped for a chat. One is very skeptical that it could be uric acid. (Doctors love forming opinions, and they love being correct. But sometimes you get multiple smart doctors with multiple conflicting opinions. Does it matter who is right? Probably not, as long as the patient gets high value care.) The urologist decided he did not need a smaller stent left in place. All we have left now is to get the PET scan (and see if there are anymore stones visible on the CT portion) and have a follow-up visit with urology. If we're good at that point then kidney stones can move from the active problem list to the past problem list. And that's the way we like it.Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com0tag:blogger.com,1999:blog-7563160744952753296.post-13589741159613159632015-05-27T18:33:00.000-07:002015-05-27T18:36:13.392-07:00Brief Update and One of Many Thank-YousTomorrow is finally surgery. Wahoo! This surgery is for work on the kidney stones that have been sitting quietly waiting for this moment. Right now J has a stent in his ureter connecting the kidney to the bladder. When people have pain from kidney stones, it is usually when the stones leave the safe reservoir of the kidney collecting system and travel the narrow tube to the bladder, the ureter. A stent opens the passageway so that the ureter can't get blocked. Tomorrow they will take out the stent, put a small scope in the ureter and try and pull out any stones that are still lurking. They may leave a smaller stent that has an easy removal system. This should be pretty straight forward, but J may try to change that.<br />
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There have been many people who have shown great support throughout this journey. I know there are many people who follow this blog, some that I don't even realize. Our gratitude to all those who have given us support will never adequately be expressed, but we would like to express our gratitude with one of the best ways we know: BBQ. It will be held June 5 (sorry if it's after June 5 when you are reading this, or if you don't live close enough to enjoy). <a href="http://evite.me/dyWcjvGD5b">Click this link and let us know you are coming.</a><br />
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If the link doesn't provide an obvious way for you to add your name, you can either get me your e-mail or leave a comment that you are planning on coming. <br />
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<br />Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com1tag:blogger.com,1999:blog-7563160744952753296.post-63632068466692228592015-05-20T19:00:00.004-07:002015-05-20T19:01:16.381-07:00More Labs, Less PokesWe returned for labs today. J was a bit glum for the labs, some sort of clothing issue and little brothers refusing to be personal slaves. Kind of foggy on the details. Other than his mood, things couldn't have gone better. When it was time to meet J at the door of the hospital, I grabbed a number for his labs. Patient number 82, and they had just called 78. Shortest waiting time ever! J slowly warmed up to the phlebotomist, and started telling him the next thing he needed to do. If he wasn't impressed, at least the phlebotomist realized J has been through this at least 1,000 times and counting. After the sample was obtained, the bleeding stopped right away. Good, the platelets were going to be more normalish than Monday. He was still a little glum and didn't want to walk all the way back to the car, but he still managed a good distance. Counting the whole experience as a victory!<br />
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About an hour later, Mom told me to call. The labs results were in. The platelets were 133 (48 last time, 140 is the lower limit of normal) and it was time to get him scheduled with urology to get the stent out. The white blood cells were at a great level. No more need to take the shot to stimulate white blood cell production. J celebrated by throwing away the left over doses (wish we had a video). He felt quite triumphant about that. The hemoglobin was increasing, so there would be no need to give a blood transfusion. In addition to the urology appointment, we're getting the follow-up PET scheduled in June. This is to make sure the area that has activity that I think is nothing is remaining a nothing.<br />
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We also learned that Friday at school will be a "fun Friday", once again with a Harry Potter theme (which has been used as a them underlying several educational activities this year). We're planning to let him attend school again. Pretty happy about how things are going right now.Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com0tag:blogger.com,1999:blog-7563160744952753296.post-16484997406042314392015-05-18T19:29:00.000-07:002015-05-18T19:29:03.414-07:00Getting StrongerJ has been doing great. Tonight he made a trip with me to the hospital to pick up something left at the hospital. It's not a short walk from the parking lot, and I don't take a very slow pace. He did a good job keeping up. I don't think he has walked so far and in such good spirits since before this began. He is getting tired of staying home all day. He is ready to get back to school.<br />
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We went in for labs today. For the complete blood count, J has the option of getting blood through a poke in the finger or by accessing the vein. For some reason he prefers to be poked in the very sensitive fingertips and have the blood milked from his fingers. The blood flowed well today, it was easy to get the sample without too much milking. After the blood was collected we were sent away. While waiting for Mom to come pick him up, we noticed the bandage was totally soaked through. I quickly grabbed some more gauze and J applied pressure on his injury. Eventually the bleeding stopped and the labs confirmed what was suspected: very low platelets. No wonder he wouldn't stop bleeding. His white blood cells were OK, but his red blood cells were also really low. They probably would transfuse him, but he feels great. Hoping to pass on getting more blood transfusions or platelets.<br />
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Once his platelets are up we are ready to get the urologist working on getting the stent out and getting rid of one or two more medications. Progress.Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com1tag:blogger.com,1999:blog-7563160744952753296.post-71127025087023158882015-05-11T19:18:00.001-07:002015-05-11T19:18:47.944-07:00Inpatient vs. OutpatientWhen we began the last cycle of chemotherapy last week we talked with the attending oncologist about when we would go home. We opted to go home Sunday night after the last dose of chemotherapy finished. They started treatment about 7:45 pm, which meant ideally he would be done at 7:45 pm. Great, not too late in the evening. We confirmed that we would take him home Sunday night as we headed into the weekend.<br />
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Mother's Day came. After dinner was finally done, Mom decided to go up to the hospital to wait with him while I put the kids to bed. My parents were still with us, so I decided that as soon as the kids were in bed, I would go to the hospital and wait with her. At about 7:00 she notified me that we still had a couple hours. </div>
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9:00 pm would still be a great time to leave the hospital. I get the kids to bed and walk to the hospital not far from where we live. I arrive a little before 8:00 and look at the IV pump, which ominously says there is another 2 1/2 hours before complete. I figured it was a mistake and that I don't read IV pumps very often. </div>
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No mistake. Uggh.</div>
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The dose finally ends about 10:20. The nurse then brings in a flush. They use long IV tubing (which is much like a leash for the captive patient) and we have to push all the drug that is still in the line into his body, at the same, painfully slow rate. Wouldn't end until 11:00. What we forgot to plan for was all the lost treatment time to get other medications. Whenever he was given Zofran, we had to pause the chemotherapy. That time added up.</div>
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Now we're wishing we weren't being discharged. I warn J that it is a bad idea to mention anything to nurses from this point forward. Any complaint, especially something new, is going to delay us leaving. The nurse walks in and the first thing he does is complain about stomach pain and ask for Ativan for nausea. He has had Ativan too recently, and has to use Benadryl. After the dose is given and all our paperwork is signed, we are finally ready to leave, at 11:30 pm. J is practically asleep and needs a wheelchair to get to the car.</div>
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This morning we report directly to Pediatric Sedation for his last spinal tap and dose of chemotherapy. J is quite grumpy (can't blame him, he has inherited grumpiness when too little sleep is obtained) and not the most polite. The Peds Sedation team is a bit confused why he wasn't in the hospital since they were planning on him still being an inpatient. </div>
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(Skip over this paragraph if you don't want a medical system tangent) Inpatient versus outpatient is an important designation for several reasons. For J, it was a practical matter. Were he still in the hospital, they would have had a dose of chemotherapy already made, because the order would have been in place. The coordination of pre-treatment preparation would have been easier. Outpatient would have been fine and they could have had a dose ready if they were planning on it from the beginning, but someone along the way told them he would be an inpatient for the spinal tap. There are other times inpatient vs. outpatient becomes important, and that's with billing. I don't know with certainty that every health organization does things the same way, but in my neck of the woods things are billed totally differently if they are done as an inpatient vs. outpatient. When someone is an inpatient, the diagnosis is key. The hospital gets a certain amount of money for each diagnosis that is being treated. That money has to be divided between all the providers, units, studies, labs, procedures that were part of that inpatient stay. So when J has an abscess, if he needs Interventional Radiology to drain the abscess and it is successfully treated, or if the drain doesn't work and he still needs surgery, the overall payment to the hospital is the same (assuming they don't know how to come up with a different diagnosis to bill), but now the surgeons have to share the money with everyone else, but the amount of money to share doesn't change. If all this were done as an outpatient, the surgeon and the interventional radiologist could bill at their standard rates (which are probably higher than the amount of money coming from the same service as an inpatient). If someone comes into the hospital with an acute problem, such as a heart attack, and they have a history of cancer, there is a temptation to order a PET scan, just to check on the status of the cancer, they will say. The problem is that nobody expects the typical patient to get a PET scan when they have a heart attack, so the cost of a PET scan is not built in to the reimbursement. It would be fraudulent to also add the cancer as an inpatient billing code if there was no active treatment of the cancer. The PET scan essentially isn't being paid for when compared to the same patient getting it as an outpatient when it actually helps take care of the patient, in the expected setting. There are many pros and cons to this system which would take far more time and far more knowledge than I have to begin to explain, but the status of the patient matters to many people.</div>
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We finally had him established as an outpatient, finally put him to sleep, and finally put an end to the treatment phase of this crazy journey. This ends three months to the date from when the lymphoma was initially discovered.</div>
Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com0tag:blogger.com,1999:blog-7563160744952753296.post-56596292334384377882015-05-10T10:42:00.002-07:002015-05-10T10:42:39.905-07:00The Light at the End of the Tunnel and a Little SympathyNo, not that light at the end of the tunnel!!!<br />
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<a name='more'></a>We decided as a family it was time for a sympathy mission. J has had to endure so much through his chemotherapy. We decided it would be great for all of us to be hit with nausea, vomiting, maybe some diarrhea, lots of aches and pains. That's how we spent Saturday. This suffering would get us a little closer to J. Actually it kept us away from the hospital all day. His grandma was the only one who wasn't sick by Saturday afternoon and she stayed at the hospital overnight. She woke up feeling sick. Happy Mother's Day!<br />
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Today is the last day to stay in the hospital! This is the light at the end of the tunnel! The chemotherapy should end around 7:00 or 8:00 tonight and then we will take him home. He's wanted puff-oven pancakes for sometime, so maybe we'll have a late dinner. Tomorrow he gets his very last spinal tap with his very last dose of chemotherapy!<br />
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So what's left from here? He will still go through his low blood counts and be at risk for infections. He still needs to get shots every day until his blood counts have returned. After his blood counts have returned he still has to get work on his kidney stones and get the stent out, which will be an operating room case. Until the stent is out, he will continue to have to take antibiotics to prevent getting a significant infection. Sometime in June he is going to get a repeat PET scan. We will see if there is anything changing about that spot that had activity on the last scan. If it hasn't grown any, I'm pretty comfortable with it not being lymphoma. If it's grown, then we are celebrating too soon. After the stent is out, he will still need to take antibiotics every weekend for about 6 months, because he is still at risk for certain types of infection in the lungs. I have no idea how long after that before he is fully recovered, but I think it's safe to bet that he's still having effects from the chemotherapy at Christmas.<br />
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In spite all that, today is a day to celebrate!Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com0tag:blogger.com,1999:blog-7563160744952753296.post-58981557480449228992015-05-07T18:21:00.001-07:002015-05-07T18:21:20.403-07:00Chemotherapy Making Its GainsChemotherapy seems to be catching up to J today. Appetite is going down. He's still eating, but it takes much longer to decide on something that sounds good. A throw-up bowl has become his bedside companion. He has requested more medication for nausea. They give Zofran as a scheduled medicine, meaning they give a regular dose at certain times of the day. If he feels nausea on top of that he can have Ativan or Benadryl as needed. He has taken a liking to Ativan. <br />
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He has also developed a bit of a cough. It's a cough that if a healthy child started to get, you may just think the person is developing a cold. As we push his body further and further and decrease his immune system, a simple cold could turn into a major infection. And there isn't much to do about it now, but wait and see.</div>
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He has slept more today than on the other days.</div>
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He just threw up. We're not certain if it's the chemotherapy making him sick or because Aragorn and Arwen are kissing on The Two Towers. Our copy of Return of the Jedi is missing, so now we're moving on to Lord of the Rings. At least there's a bit of action ahead of us in the movie. </div>
Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com0tag:blogger.com,1999:blog-7563160744952753296.post-26424720319359255642015-05-06T19:34:00.000-07:002015-05-06T19:34:01.293-07:00Top 10 Things to Pass the Time While In the HospitalThis is a list of the top 10 things to help J pass time in the hospital. (This list is his, editorial comments are mine.)<br />
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10. Going to the bathroom. Hey, this isn't my list. Who am I to argue?<br />
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9. Nurses. No, he's only 11. They aren't helping pass the time that way:) J is very inquisitive, though and has learned so much from watching what the nurses do. He has this great way of looking like he's not paying attention, but later shows he didn't miss a detail.<br />
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8. Food. Food is great, when you have an appetite. The chemotherapy tries to break that appetite. It's also good when the food served is tasty. I think J has only had about 1/2 a meal from the hospital cafeteria. Most of what he eats is brought in special from home. Tonight was more tortilla chips with nacho cheese.<br />
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7. Visitors. This would probably get a higher rank, but many visitors have actually been more interesting to Mom and Dad than to J, but when it's his friends from school, it is great. (If you are one of those adult visitors, don't feel bad, we love having your visits, too).<br />
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6. Teacher. His school teacher has been his tutor. This admission he has finally felt well enough to do some schoolwork in the hospital. It was sad when we first realized that he would miss most of the remaining school year because he really enjoyed school. The time his teacher has spent with him, in the hospital and at home, is a great gift.<br />
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5. Books. <br />
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4. New Lego sets. This has proven to be the best distractor. J can be groggy while recovering from anesthesia with incisional pain that isn't controlled, but still turn all his attention to a new Lego set.<br />
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3. Kindle. Particularly the game Apps. Angry Birds GO is a new favorite.<br />
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2. TV. Whether re-run after re-run after re-run of Disney Channel shows or Cartoon Network or more serious movie marathons, the TV is a sure way to pass the time.<br />
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1. Sleeping. Unfortunately, sleep in the hospital has so many interruptions (mainly numbers 9 and 10 on this list). I love the moment when his breathing deepens and I realize he has drifted off to sleep and for a brief time will be in a peaceful sleep. <br />
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The other neat thing about J is that I think he can work on all 10 of these items simultaneously. Crazy. Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com0tag:blogger.com,1999:blog-7563160744952753296.post-30227366305441870542015-05-05T20:38:00.000-07:002015-05-05T20:38:56.627-07:00Cinco de MayoToday's excitement included yet another trip to pediatric sedation to get a very good short nap while long needles are jabbed into the back. I think this is the 7th time he has had intrathecal chemotherapy (chemotherapy injected through a spinal tap). He's an old pro. He listened to Rockelbel's Canon by Piano Guys over and over on my phone while he was waiting to be put to sleep. If you have never heard this, check it out <a href="https://youtu.be/LV5_xj_yuhs">here</a>. J was actively involved in the idle conversation in the procedure room as we waited for all the players to arrive. So nice to see him so happy. As soon as they put him to sleep, we are dismissed from the room, and we decided to go get lunch and meet him in his hospital room after the very short procedure. When he arrived he wanted two things. Food and the pulse oximeter removed from his finger. He received both. He had pizza on a piece of naan. One piece wasn't enough. He ate two.<br />
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Chemotherapy was started later in the day. He passed the time with his school teacher who came to tutor him. The report is that after the school work was finished, they played a game of Scrabble, and J managed a victory over his teacher. He finished The Empire Strikes Back. That's 5 of the 6 Star Wars movies in two days. What a champ. His nod to the Cinco de Mayo celebrations was to have some tortilla chips with nacho cheese for dinner. Maybe not the most amazing celebration, but he was trying. <br />
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The most important detail of the day is just how pleasant he has been. He will interact with the nurses and doctors. He's pretty polite (still an 11-year-old boy and needs some reminders). He likes to joke around. He likes to laugh. I hope as the week progresses he doesn't get too beat down. It's so nice to see him this way.Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com1tag:blogger.com,1999:blog-7563160744952753296.post-85124553235867729292015-05-04T20:33:00.002-07:002015-05-05T05:46:39.712-07:00May the Fourth Be With YouAll good things seem to come to an end, like vacations from treatment. J has returned to the hospital. Would have been better if he it was tomorrow, The Return of the Fifth. <br />
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I worked the second shift today, so I was able to take J into clinic. Our first appointment was the ultrasound. This is where I had my first run-in with the system. We checked in, and the receptionist started asking the important questions for an ultrasound, like "When did you eat last?" I was actually a bit puzzled, because that's something you ask about if you're going to scan the gallbladder, which we had no need to do so. J had eaten breakfast, so I started telling the receptionist that it didn't matter (the receptionist did not know me as one of the radiologists, and was a touch skeptical). They checked with the sonographers, who then checked with me to see if it was OK that he had eaten. It was OK.<br />
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The ultrasound was done to follow-up the uncertain finding on the PET scan. There were two parts to the finding on the PET scan. One was a little bit of something that was using sugar (metabolically active, like cancer can be). The second part was a little behind it and looked like a little fluid collection, although it's often hard to know if it's fluid or something solid. The ultrasound was not meant to clarify what these were, but rather to show that nothing was growing bigger. We didn't find anything that looked like a mass had just exploded. Primary end point achieved. We didn't find anything that corresponded with the part on the PET scan that had activity. Another nice feature. We did, however, find the second structure from the PET scan, the part without any activity. It looked kind of like it is solid (not what we want it to be), but there was no blood flow inside it (a little bit better of a finding). It was probably a little smaller than it was on the PET scan. Overall, this was good news, even if we still don't know with certainty what it is.<br />
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We then went to clinic. We discovered a problem. No rooms in the children's hospital. Five people needed rooms from the oncology clinic. Before we could address the problem with no rooms being available, the oncologists had to review the ultrasound findings with the interpreting radiologist and feel comfortable with the plan to proceed with treatment. After they felt good about it, we needed to get the port accessed and draw labs. J was a champ and cooperated fully with the nurses accessing the port. Then we had to wait for the labs to come back. When they did, they were odd, but good enough to start chemo. The white blood cells were elevated, kind of in the range when somebody has an infection. His platelets were also really high. It had been a long time since we had given the medication to make more white blood cells, so it was a little odd that everything was so elevated. Since one of the questions the oncologists had was whether this was infection or not, I was worried we may not get to start chemo with these lab results. Happily, they said we were good to go with treatment.<br />
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4:30 pm and we finally get to go to a room (the ultrasound was 9:15 am). Kept the fluids running and started the chemotherapy this evening. It's the colorful green stuff.<br />
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To celebrate the day, J watched Star Wars The Phantom Menace. Going to see all six Star Wars this week. Can't wait!Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com0tag:blogger.com,1999:blog-7563160744952753296.post-25963306056891482072015-05-03T18:46:00.000-07:002015-05-03T18:46:52.478-07:00The Last NightIt has been a nice break in between treatment. J was able to attend school on Friday. This is the first time he has been to school since February 11. Grandpa took him to school. They were having a Harry Potter Day. This would be the first year at Hogwarts given that he is 11. Crazy, he could be learning spells and flying broomsticks. Makes going through chemotherapy seem kind of dull and boring. His class was happy to see him. Apparently when Grandpa dropped him off, someone in the class yelled 'Jonathan is here" and in a moment the class was surrounding him. He then told Grandpa he could go. Mom was worried the whole time that he would be tired or feeling unwell, and I had to hold her back from checking in with the teacher to make sure he was OK. He lasted the whole day. One of the teachers thought he had shaved his head just for the event. He was dressed up as Voldemort. Maybe someone has pictures that will make it to us, and I can post.<br />
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He took his medications without complaint for the last several days. He had a friend visit today. He ate bone-in pork chops and enjoyed eating the meat straight from the bone. He took a walk with the family around our neighborhood tonight and I noticed just how scrawny his arms have become. He's in bed now, hopefully asleep. This is last night to sleep without somebody coming in to his room and waking him. This is his last night to sleep without getting so many IV fluids that he makes a trip to the bathroom every hour. Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com0tag:blogger.com,1999:blog-7563160744952753296.post-61190172872693061172015-04-28T19:14:00.001-07:002015-04-28T19:14:12.057-07:00HIPAA and Losing My Job (Almost)The Health Insurance Portability and Accountability Act is an interesting piece of legislation that came close to costing me my job today. OK, maybe a bit dramatic, but maybe not. Being a physician in the same hospital as all of J's doctors does create potential hazards. My hospital takes an extreme position in interpreting this and all other laws. They don't want to even come close to the line. As such, any visit into J's medical chart can be grounds for discipline including up to termination of employment. I always need to be on my toes.<br />
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The working plan with the kidney stones was to assess how many kidney stones were present on the PET scan, and where they were located. Depending on the results (although I don't know the real decision making that was going to be employed) the urologist was going to take a look at the ureter, remove any stones, and downsize the stent. I was supposed to inform him of what the PET scan showed. I decided to wait until the report was finalized, but sadly that had not happened by noon today, so I paged the urologist with a brief summary, and my contact information. He must have forgotten that I was supposed to give him results. Instead of simply responding to me, he sent a message to one of the pediatric radiologists (who doesn't read PET scans) and asked him to review it with him and I could be there (that way I wouldn't need to access his records). Unfortunately he sent the message through our electronic medical record's messaging system, and linked the message to J's chart. If the message is opened, the chart is opened with it. They have software in place to monitor inappropriate access to medical records. I have every reason to believe that my activity was flagged for reading a message from one of J's doctors. I called are Information Security Office and surrendered my life and three of my children as payment for this violation. Actually, they know that this can happen innocently, so I gave my name and they recorded it for when they review flags in the system. A tedious problem, but J's confidentiality was preserved, so it was worth it. And while my job was in jeopardy, it wasn't really.<br />
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Yesterday J had repeat blood counts. His white blood cells had dropped significantly from last Friday. He had stopped receiving the injections to boost the blood cells, and this is what happened. We still had two more doses at home, and we were instructed to give them to him. His platelets also dropped farther, down to 21. Below 100 is low. Below 50, nobody feels very comfortable doing a procedure, especially if there is no urgent need to do the procedure. The risk of bleeding uncontrollably is too great. I shared the platelet results with the urologist as well. He decided we were better off waiting until after the next round of chemotherapy before we attempt to remove any stones or the stent. J was sad. He actually cried. He has pain whenever he urinates, and it's probably related to the stent and a stone in the end of the ureter, both of which can cause irritation of the bladder and ureter, causing pain. He was excited for that pain to end. Poor kiddo. We weren't as sad. The surgery was scheduled for 3:00, and that's assuming all the other cases are finished on time. Didn't sound like a fun day to starve a kid for a late afternoon surgery. We'll revisit the kidney stones sometime in the future.Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com0tag:blogger.com,1999:blog-7563160744952753296.post-23988214153098272102015-04-27T17:42:00.002-07:002015-04-27T17:42:38.211-07:00PET ResultsThe PET scan was this morning. While we were home, J seemed ready to cooperate. One needle poke and he would be finished, then he would just need to lie on a table for 20 minutes. Good plan until he had to drink nasty oral contrast material. He decided he liked lemon flavor much better than raspberry flavor he was given. He decided he needed to urgently go to the bathroom right before they were ready to inject him. He decided (remembered, OK never really forgot) that he hates any sort of shot. He told the family at dinner that he learned that even small needles hurt. He finally was injected. An hour later he was ready to be scanned, well kind of. It took some convincing for him to allow us to position him on the table correctly. The techs were patient and kind.<br />
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When we do a PET scan, we always perform it with something that lets us determine the density of what the radiation is traveling through. Unless you are using a really old scanner, this is done by CT scan (some people call this a cat scan, but that gets confusing when you are also getting a pet scan), unless you have a really fancy PET scanner using MRI. The CT scan was obtained first. <br />
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When the lymphoma was first diagnosed there were three large masses. The largest mass was in the pelvis and was already turning to mush when we found it. It was this mass that turned into the abscess between the 1st and 2nd round of chemotherapy. The other two masses were next to the spine and right kidney in what we call the retroperitoneal space. The two retroperitoneal masses were still present, but had considerably shrunk in size to where they are just a little bit bigger than normal lymph nodes usually can get. The mass in the pelvis couldn't be seen anymore, but there was a little bit of soft tissue (as opposed to fluid or bone, most organs and masses are soft tissue density) that didn't belong in the pelvis. Next to this was a small amount of fluid. Both of these findings were right near the edge of where the original mass was, and they are at the spot where one of the drainage catheters was placed after the surgery to remove and drain the abscess. <br />
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The second part of the scan is the PET scan itself, showing where things are actively eating sugar. The retroperitoneal lymph nodes had changed from being extremely active (consuming lots of sugar) to taking in no sugar (dead or treated lymphoma). The fact that we could still see the lymph node on the CT scan doesn't bother me. We see some leftover lymph nodes in a fair number of patients. Those lymph nodes tend to get smaller and smaller over time, but may never completely go away. So this was an excellent result.<br />
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The large pelvic mass is where things get a little interesting. That small area of soft tissue had a little bit of activity. It was enough that we can't just ignore it and pretend it isn't there. However, a radiologist that sees activity and automatically equates it with active cancer, is not being very thoughtful. The degree of activity was similar to the level of activity found in the surgical scar in the abdominal wall. Scar tissue and infection are things that can look like active cancer, because they also use sugar. We are left with the dilemma of not knowing whether this is left-over scarring related to the infection and surgery that he had about 6 weeks ago, or if this is leftover active lymphoma. It could possibly represent cancer cells that are resisting the chemotherapy and will come back with a vengeance in a week or so. <br />
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If there is any indication that this is active lymphoma, the plan would be to have more surgery to remove the mass and look at it under the microscope. If there is active lymphoma, then he would get two more cycles of chemotherapy (total of 6). The surgery would need to happen before we started round 4 of chemotherapy. Round 4 would then need to be pushed back for recovery time. If they took it out and didn't find any significant amount of lymphoma, then he finishes after round 4 of chemotherapy, which would be delayed until he recovered from surgery. One of the downsides of surgery is that they would be operating in a place where he has had an abscess and a prior mass. Areas like that tend to get scarred down. Surgeons operate through scars all the time, but the risks of complications from surgery around scar tissue increases. It puts them at more risk of cutting something that shouldn't be cut.<br />
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If we really think this is just scar tissue, then we can proceed with chemotherapy as planned. Because there is still a decent amount of activity, we would want to do another PET scan a few weeks after the 4th round just to make sure that it wasn't getting any worse, and that we weren't missing relapsing lymphoma. We also would have the option of doing a scan right at the beginning of the 4th cycle to make sure there is not an enlarging mass in the pelvis. If there were, we would return to the surgical plan.<br />
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It is my opinion that this represents reactive changes and that we would have to search hard to find active lymphoma. One of the oncologists wandered into the radiology department as my colleague and one of the residents were reviewing the case, so I brought her to the reading room to see what her opinion was. She liked my explanation as to why it was probably scar tissue and left over activity from the abscess. She likes the idea of treating with round four, probably with an ultrasound at the beginning of treatment to see if a mass is suddenly growing. Assuming there wasn't a mass, we would proceed with chemotherapy and get a PET scan a few weeks after chemotherapy, just to make sure we're not overlooking something. She has two colleagues. The three of them will talk it over and make a plan. I hope they agree with me. I would be happy to avoid another trip to the operating room.<br />
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<br />Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com1tag:blogger.com,1999:blog-7563160744952753296.post-74664158090681253432015-04-26T12:09:00.001-07:002015-04-26T12:09:37.398-07:00Weekend UpdateBeen a few days. Here's the summary. J made his own lunch the other day. He likes to drink from a straw, and he needed a new one, so he climbed up on the countertop so he could reach the straws on the top shelf of our cupboards. He spent a good amount of time doing schoolwork with his teacher, who has been his tutor. He takes his medicine with only a little complaint. He sleeps through the night without waking to go to the bathroom. He wears clothes and doesn't complain of any surgical incision. He beat Mom at Monopoly today while most the rest of us went to church. The only symptoms he is having are pain when he urinates related to either the ureteral stent or the leftover stones. Not nearly as bad as what sent him to the hospital earlier this month, but still there. <br />
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Thursday he had his blood levels checked. This was three days after the last chemotherapy, and we anticipated he would need a blood transfusion and the shots to make his white blood cell production increase. It was a bit frustrating for Mom (I was still out of the country) as the clinic never called with any results and it took a bit of time after hours to get an answer, but the labs were good. The white blood cell count was elevated, which either means there is an infection, or it's the normal response from getting the stimulation shots, but no more shots were needed. The hemoglobin (red blood cells) was improved from earlier in the week and he did not need a blood transfusion. His platelets were still pretty low, making him more likely to bleed. With the change in chemotherapy, I assume his time to recover also changed. Great news overall.<br />
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Monday he gets his follow-up PET scan. Easiest if there is no activity or no detectable disease. Then we know for sure there is only one more cycle of chemotherapy and we are done with a very intense three months. If it's positive, I'll update when I know more.<br />
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Wednesday they will take him to the operating room. They will use a scope to look in his ureter for any leftover kidney stones. They will probably downsize the stent to a smaller one. Should be simple, but it is under general anesthesia.<br />
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Aside from that, we have nothing else to look forward over the next several days, except J, who plans to go to school for their Harry Potter day on Friday.Nathanhttp://www.blogger.com/profile/07907558106724974598noreply@blogger.com0