I NEED A STIFF DRINK!
A parent's view of Jeri's journey
Our family is getting over the shock of Jeri’s diagnoses and is attempting to move on with life. It’s amazing what a difference a day makes. We were worried about who would go to the dance competitions in Galveston and San Antonio and how Randi was handling her new boyfriend. Now we are just wanting to get Jeri’s treatment started and occasionally ask “why” along the way.
Jeri is handling things pretty well so far. The pain is not much different than it was two weeks ago and she was still dancing at that time. We hope the chemotherapy goes well and that she doesn’t get down during the process. She’s a strong girl and comes by it naturally. We think she'll do just fine.
Link to Melanie and Kevin.
Epilogue - Jeri's Unplanned Adventure has ended much the same way in which it started. To quote from February, 27, 2000, "I'm somewhere between denial and angry and headed toward depression while waiting for rebuilding. I want to strike out at the cause of this thing but, obviously, there is nothing to strike." There is now an emptiness in the house that is hard to describe. I see Jeri's things and want to imagine that she's just gone out with her friends or has an overnight adventure. We'll have to deal with her things, especially her room, in time but now is not the time. Randi's gone off to college as well so Virginia and I are "empty nesters" about 3 years and a lifetime ahead of schedule. I've made it through day here and there without that allergy problem that clouds my eyes but then out of the blue, random thoughts occur or an object is sighted and those thoughts return. Time will be part of the answer. The emptiness and hurt will never go away completely. It will only find a compartment in my heart and thoughts to hide in and show it's face a little less often. This will happen because it must happen. I've had a chance to reflect and, in some cases, visit with friends and family who have lost children or loved ones and they tell me it never completely goes away. I suppose, in a way, that is good.
Jeri was simply amazing throughout her unplanned adventure. I remember asking her one time if she was angry that this had occurred to her. She said, "a little bit." I asked her if she wondered why this happened to her and not to someone else. She replied that it was, "because I can handle it better than some of them can." I wondered about her response at the time and soon realized that she was probably right. She never complained, even when asked directly. The only frustration she showed was toward the end when she was no longer physically able to spend time in her room. That was her favorite place to spend time reading and listening to music. She also practiced some of the tricky dance steps, at least that's what it sounded like from below. Jeri loved spending time in her room. That was her place in a busy house. It was typical of Jeri to stay private with a large part of herself. She loved her friends and loved her family but she always kept something back It was that way through her illness as well. You would never know that she was in pain, denial, suffering or depression because she didn't want you to know. Even I feel like I never really knew how she felt about the whole thing because she would never unload her feelings or complain. But that was Jeri. Unbelievable dignity and grace, always believing that hard work would be enough and believing in herself that she could get the job done. These qualities have shown through as we've heard stories from friends and teachers who knew her. Jeri was the one that challenged others to step up and succeed, not worry and fail. She will be missed, not only by her family, but by others whose life she's influenced. Our family must take heart from those character traits and know in our hears that Jeri wants us to step up and succeed as well, not lay back and worry about things we can't change. Her life was short but her influence was wide. Someone once said that heroes are ordinary people doing extraordinary things. Jeri was a hero as far as I'm concerned although I'll never consider her ordinary.
The response to Jeri's adventure has been nothing short of amazing. We will be forever indebted to all who kept Jeri in their prayers, who remembered her with special visits and gifts, friends who caught her up on what was happening at school and let Jeri be a teenager, She was also remembered again at 2 very special special services in Silverton, TX and Houston, TX. The Silverton service was outdoors on a beautiful day with a large gathering. The Houston service was a chance for her classmates, dance team members, teachers, doctors, neighbors and others, over 300 strong, to pay their last respects. Both were moving tributes to Jeri's life and to the caring and love that others have for our family. The contributions to the Make-A-Wish foundation and Hospice of Houston have been amazing. All will help others like Jeri to experience their wish or finish their time on this earth in dignity and grace. We can never really say how much that meant to us so we'll just say thank you.
So now it's time to finish the final chapter. We'll always hope that we've done everything we could have done as parents. I suppose there will be doubts from time to time on whether we could have done any more. We'll think those thoughts but try our best to not let them become an obsession. We'll wonder what kind of person Jeri would have become had she had a chance to fulfill her dreams and achieve the kind of education she dreamed about. To me, at least, she'll always be my little girl, she'll never be older than 15, always love shopping for just the right fashionable things and always be the one with my cheekbones. We'll miss her.
Jeri's journey didn't have the ending that was planned. She was not the first nor will she be the last to fall to cancer. It will take more advances in medical science to ensure that no children or parents have to go through the same ordeal.. Those advances will eventually come through the dedication of the doctors and researchers like those who did their best to help Jeri. We can only hope that they come sooner rather than later.
On a final note, let me just say that I'm still somewhere between anger and denial on the way toward rebuilding. I'm pissed and expect to remain so for quite some time.
Jeri's finally dancing again..................
7/29/2001 - Hearing those terrible words spoken by the team of doctors is extremely gut wrenching even if deep down inside we already knew what was coming. There is a finality to hearing the unspoken spoken. It confirms the darkest fears and surface the terrible demons that had been so buried for so long. This is the place we feared the most when the news was first delivered on the fateful day in February of last year. And so it is that nothing ever quite prepares one for facing the final challenge. Through it all, I cannot bring myself to truly give up hope. I'm the kind of person that would still be bailing water on the Titanic or fighting the fire on the Hindenburg., Giving up is not something I understand. Giving up is not something I'll do right now either. The most difficult thing of all is seeing Jeri fading before our very eyes. Her mind is sharp and she still gets off a zinger from time to time. However, the body is rapidly weakening. The change over the past three weeks has been extraordinary. She struggles for every breath. Talking is getting more and more difficult. Through it all she maintains her dignity. She's more concerned about the rest of us and how we handle it than she is herself. That's Jeri. Always giving, never taking. And it's such a crime to take someone who is so good inside, who means so much to others and who had so much life to live. I'll never understand how she was chosen to face this fate. I got through the denial stage and said that I was now just pissed that such a thing could happen to such a good person. I'm still pissed and will remain so anytime I think of the forces that are taking Jeri from us. Then I'll smile when I remember that Jeri wants nothing more than for each of us to take responsibility for ourselves and do good by others. She's always been that way and in my mind will always be that way to me. I've heard so many stories of good and kind things that Jeri has done that I never knew about. That just confirms what I already knew. Someday I'll be able to think about these things without my "allergies acting up and clouding my vision." But not today. Today I'll just have to keep the Kleenex handy except when Jeri's watching.
6/17/2001 - The roller coaster is now headed down into the darkness and the end can't be seen. I'm angry and sad right now. The doctors have let Jeri down. The spots on her lungs that were controllable and being used as markers for the treatment are now inoperable. The option for surgery to buy time appears to have been lost. How could things have gotten so out of control? Now we can only hope that this next attempt at a clinical trial treatment can stem the growth and kill enough of the tumors to make surgery an option once again. How could it have come to this in this way? The people Jeri trusted have let her down. Why weren't they watching closer. Why was I so trusting and why wasn't I demanding that they do so. I'm so angry. Despite that, Jeri goes on. She's showing all of us that she hasn't given up, is staying positive and continues to work at her walking. How can I help but admire her courage. Meanwhile, I'm experiencing a depth of emotion that takes me back to when this thing started. I'm doing my best to be strong around friends and family, but especially around Jeri. However, in moments of privacy it's difficult to keep the emotions under control. Here I am a grown man, hardened by months of dealing with this thing, and I cried myself to sleep last night I feel weak when I see the strength and determination that Jeri is showing. She deserves to beat this thing. She certainly deserves to enjoy some of her time as a teenager doing teenage things. That's the way she wants people to think about her too......just a teenager. Meanwhile, the quest continues and I'm now more pissed than ever.
3/31/2001 - The roller coaster keeps going up and down. It's currently in the down position. Jeri's now headed toward clinical trial methods. This is not a good place to be. It means that the proven methods have not worked. This thing started with about a 75-80% chance of success and has now Jeri finds herself on the wrong side of the 20-25% that don't have success. We had our consultations with TCH and just to be sure checked out M. D. Anderson Cancer Center. The conclusions were about the same. M. D. Anderson Cancer Center had an option that was available after some of the clinical trials. The clinical trials for kids are things that have been tried with adults with some success. They are seeking the right dosage and delivery method for kids and will evaluate the results. It's not to say that there is no chance but it's fairly small. However, if it's even 10% and it works then it's 100% for Jeri. We've researched the possibilities with the intentions of keeping as many options open as possible. Therefore, Jeri will try a clinical trial at TCH where she's comfortable and save the M. D. Anderson Cancer Center as a fall back. She also faces surgery on both of her lungs. The only question is when. They would like to administer at least one treatment and use the spots on her lungs as a baseline to see if there is any effect. To say that things are looking dire right now is something of an understatement. The best thing for now is to continue praying for a positive result and give these treatments a chance. In the meantime, I will continue to stay pissed.
1/25/2001 - Looks like I'll get to stay pissed a little longer. I should have taken a lesson from all this experience and refrained from getting my hopes up. Dr. Murali called to say that a preliminary review of the CT-Scan showed that the old spots grew slightly and new spots appear to have formed. He wants to do a more thorough review tomorrow with the doctor that did the interpretation. He'll call sometime tomorrow with his findings. Now there are just more questions. What comes next? Is this just a temporary setback or are the fears from July 20, 2000 back in force? Will he recommend surgery on the lung? Will conventional chemotherapy be recommended or will it be something more experimental and dangerous? Is this just a setback or something much more serious? Many questions but no answers right now. It's not a good evening right now. I guess I'll have to go get one of those stiff drinks and ponder the unknown.
1/24/2001 - It's been two months since my last entry on November 14, 2000. It was the best news we had received on the effectiveness of the chemotherapy. The leg reconstruction surgery appears to be a success but it would be for naught without success in chemo. Jeri has had two cycles or courses or whatever the term is since the last CT-Scan. Jeri handled them just fine. The previous positive news helped the rest of us in knowing that things might be on the right track. None of us had to worry about little things like proof along the way because the time for the tests was set. That time is tomorrow. Managing emotions has been a difficult thing and those problems are exacerbated by the overwhelming sense of anticipation. CT-Scans were no big deal when this all started because they were all coming back clean. That all changed on that fateful day of July 20, 2000. That's the day we received the terrible news that the cancer had metastasized in Jeri's lungs. Devastating news. It changed the whole equation of expectations. The roller coaster really, really began to make it's climbs and drops, loops and turns. Now, it's hopes, prayers and great anticipation for confirmation that the indications of success have been confirmed. I don't know whether to be excited and risk disappointment, somber and prepare for the worst, anxious and pace the floor or face tomorrow like so many other days and deal with what it brings. The latter is probably the right answer but it's very difficult to suppress feelings of anticipation. I suppose we've had enough ups and downs that we've learned to expect the best and deal with the worst. Oh yeah, notice how I've conveniently presumed that Jeri's leg is healing well. That's probably a dangerous thing to do but we have to take one thing at a time. This all probably sounds confusing. Let me confirm that it is. Tomorrow will come, the tests will happen and maybe well hear the results in the early evening. Maybe. Maybe not. It all depends on how busy the technicians and interpreters are. I'm absolutely sure that Dr. Murali will be pressing for results because he always is when it comes to these things.
So here I am, late at night, being a bit anxious while Jeri is in her bed asleep. She's already decided that tomorrow will be a good day and there is nothing else to be done until the morning. I've always said that she's handling this the best of all of us and she's proved it once again.
I'm still pissed. Readers of this section know that I've resolved to stay that way through this unplanned adventure. I'm really looking for a reason to at least partially get over it. We shall see. There. You see how that anticipation keeps creeping back. My optimistic nature is creating expectations that I hope will be confirmed. But should I remain circumspect for now. Maybe not. Maybe surf the Net and see what Freud has to say. Who cares. I'm too keyed up........got to go to bed. Aaaaargh!
11/14/2000 - Jeri had her latest CT-Scan today. I'll not recount the events of 10/20 other than to say that this particular chemo regimen of Ifosfamide and Etoposide (see the third roadmap) appears to have built on previous results. Jeri had 8 tumor nodules identified in her right lung after the last CT-Scan. Today's preliminary results are that 2 were completely gone, 1 had shrunk to "pin prick" size, 5 had shrunk and, best of all, there were no new ones. The cancer in Jeri's body exists in a microscopic form except where it has manifested itself as tumor nodules in her lung. The increase or decrease of the nodules are the only identifiable manifestation of the cancer. That makes changes in size/number useful as an indicator of the effectiveness of the treatment. We must say that there is no absolute certainty that what is seen in the CT-Scan is absolute proof that the drugs are working. However, it's the best indication we've had so far. It's time to stop and say thanks to everyone who has kept Jeri in their hearts and prayers. She's still got a rough road ahead but we can take some relief in knowing that this time, she may be on the right track.
10/20/2000 - Finally.....a bit of good news. OK, I'm being selfish. Early diagnosis was good news. So was successful surgery and leg reconstruction (we think, the jury is out on that one but it looks good). The needs to which I refer is that the war on the "big C" is being won. The troops had been retreating but we heard evidence today that the offensive has begun. Now it's a war that we can once again begin to believe can be won. Not that I ever believed otherwise but even optimists need positive reinforcement from time to time. Enough of the war metaphor. Here's the story.
The entry on 9/18 (see below) discusses the surgery that was done on Jeri's left lung to remove nodules, or spots, from her left lung. A CT-Scan was done after the surgery but before the chemotherapy and it revealed that additional nodules had formed in Jeri's right lung. This was evidence of the aggressiveness of the tumor once it took hold. (Remember, after the bone tumor was removed from her leg, there were still billions of microscopic particles in her body that had to be killed by chemotherapy.) The chemotherapy proceeded as planned, using a new set of drugs called Ifosfamide and Etoposide (see the third roadmap). These were the last two drugs that were part of a standardized chemotherapy regimen. The only good news at that point was that the nodules that had now formed in Jeri's right lung would provide a way to get some form of tangible evidence on the effectiveness of the drugs.
The only thing to do was then wait until time had past following chemotherapy and perform another CT-Scan. That procedure was completed on Monday. We received preliminary results on Thursday, yesterday, that there was reason for optimism because there appeared to be a favorable reaction. Dr. Murali and colleagues reviewed the results today and provided more detail. There were a few small spots on the left lung, however, they believe that they were already there but couldn't be seen previously. Evidently they changed procedures on this and prior scans. These may not be anything to worry about. The right lung is where the positive events occurred. One of the nodules was gone. Some had shrunk and others were stable. That's a long way from being "out of the woods," but it's a heckuva lot better than a month ago. The next round of chemotherapy will be scheduled soon. We'll also meet with Dr. Murali, probably early next week, to find out more and get his thoughts on the next course of treatment and beyond.
It's a long story but I figured it would be easier to follow the sequence of events if I provided some background. All of those hopes, prayers and good wishes must be turning things Jeri's way. Thanks to everyone who has taken such an interest in Jeri's case and is keeping up the pressure on your know who for a recovery for Jeri. It's a long way from being over but the day is a bit brighter than yesterday.
By the way, I'm still pissed............
9/18/2000 - We've received the results of the lab tests on the nodules removed from Jeri's lung. The eight nodules that Dr. Nuchtern was concerned about were metastasized osteosarcoma. In layman's terms, that's bone cancer that has spread to other parts of the body. It was not good news but not unexpected news. We can only deal with what is next an that is helping Jeri recover from the lung surgery. Then we'll face the next chemotherapy. We hope and pray that this attempt will be more successful than the last. Everyone who reads this account knows that all prayers are readily accepted and appreciated. We should all have the strength and optimism that Jeri exhibits. That still doesn't keep me from continuing to be pissed about the whole thing. Again, those who read this account regularly know that it is merely an expression of my frustration.
9/15/2000 - Jeri had surgery on her lungs today to remove the spots that had shown up in the last two CT-Scans. There were 4 spots on her left lung. See the 9/1 section below for a description of the last CT-Scan. One of the issues when this surgery became a reality was whether Jeri's sternum should be opened and both lungs examined. Dr. Murali and I had discussed the subject and come to an agreement that this surgery should be as least intrusive as was possible. Virginia and I had discussed the situation and did not see the point of doing such an invasive surgery when it was unclear what could be done to deal with the spots, regardless of what they were. The chemotherapy up to now would likely be proven ineffective if the spots were cancerous. It was unknown if the next course would be effective and to what extent. There was no reason that we could see to put Jeri through the pain and disfigurement of thorax surgery unless it could positively contribute to the outcome. Dr. Murali is naturally conservative and wanted to do as much as possible. After consultation with the surgeon, Dr. Nuchtern, and further review of the CT-Scan, they agreed that a more significant surgery than an arthroscope was necessary but that it was not necessary to examine both lungs at this time. Therefore the surgery would be a 2-3" incision just below her left armpit. The spots would be removed and the lung examined to see if there were any other indications of tumor. Both doctors had warned that there might be things that the surgeon could feel that did not yet show up on the CT-Scan.
Nine spots were removed versus 4 that were identified in the CT-Scan. Dr. Nuchtern was able to find 5 by feel. Who knows if they would have shown on a CT-Scan today. It's hard to say since the tumor appears to grow very fast. He said that he was pretty sure that 8 were cancerous and that 1 was probably scar tissue. We'll have to wait on the lab tests to confirm the results. That will take a couple of days.
Here's a chronology of the day. It will sound like whining. That is not the intent. We know that hospitals work on different time than the rest of us. We affectionately call it "hospital time." The main thing is that this is all about helping Jeri, not about Virginia and I feeling that we are being put upon. Nevertheless, I wanted to include a chronology so that we can remember some time in the feature and that all who read this can get an impression of how these things work.
The day started early. We left the house at 7:30am to be at TCH by 8:30am. Surgery was scheduled for 10:30am. The procedure was to take about 1 1/2 hours. We knew something was wrong when the three of us waited a couple of hours and had not yet been called for the pre-surgery preparations. We began to inquire about the situation and were advised that Dr. Nuchtern was running late due to his first scheduled surgery taking longer than had been planned. It was after noon when we were finally called to the pre-surgery preparation area. The session began routine enough. Measurements were taken and we were asked questions about Jeri's medical history. We made jokes that we wished their computer worked since we had been through this several times already, including a phone call last night from the pre-admittance people. The nurses asking the questions joked back that the person must not have written the questions down but that they liked to ask them again in case anything was missed. We then went to the next room with a different set of nurses and were asked the same questions. This time it wasn't so funny. We asked why we were doing this again and were told that they worked with the anesthesiologist and wanted to be sure of the answers. They also asked about blood counts. Virginia told them that Jeri had counts yesterday morning and had to have platelets. There was another sample of blood taken around 4:30pm and that the analysis should be available. It was not in their computer. They said that they needed to have another sample. They needed to call a TPN nurse. I'm not sure what the acronym means but they are the only ones that can draw blood from Jeri's central line. (Note, Jeri has an apheresis line rather than a central line but they are effectively the same for this purpose.
Back to the waiting area. We were notified about an hour later that the TPN nurse had arrived and that we should proceed to the preparation area. (Editors addition 9/18 - TPN is used to reference a person but is based on what they do. They are in charge of administering TPN or Total Parenteral Nutrition. TPN is a complete form of nutrition usually administered through a central line. Thanks to Dr. Kathy Feisel, my loving medical term editor and sister-in-law. This isn't the first time she's helped me with some of the terms. Thanks Kat) The mystery of the missing blood work from yesterday afternoon continued. The nurse in the preparation area was working hard to chase down the blood sample. She confirmed that the Gulf Coast Regional Blood Center had received the sample for matching of potential blood needs but the lab at the hospital had not. They still needed to confirm that the platelets were high enough for the surgery and the type of blood. We got after them that this was Jeri's 4th surgery and that they should have her blood type information in their records. Frustration abounded on all sides. The TPN nurse explained that they needed to check the blood prior to surgery because the "stuff" that resists infection can change due to all the chemo Jeri has done and the anesthesiologist need a current reading, as did the blood bank, to ensure that everything was dosed correctly. Samples were taken and we waited. While waiting, someone else came and started asking the same questions we had answered earlier in the day. It wasn't funny this time. He was a young doctor that assisted Dr. Nuchtern. We told him to check the last three. He asked if we had answered them for a doctor and noted that a doctor might hear or follow-up on something that a nurse could not. Arrogant a........... We answered the questions. Meanwhile, Jeri wanted to get the drug that relaxes her before the general anesthesia. She knew the name. I did not.
The blood counts came back and the platelets were at 117,000 versus a minimum requirement of 75,000. The surgery was a go. Jeri was taken to the operating room around 1:30pm. She had gotten the drug she had requested. There was nothing for us to do but wait so we decided it was time for lunch. Virginia, her Mom and Dad, and I went to the Rotary House. The Rotary House is a multi-purpose facility in the medical center complex to provide housing for patients and give people a place to relax away from the hospital setting. We returned around 2:30pm and learned that the surgery was just beginning. No explanation for the delay was given nor was one requested by us. Virginia called and left a message for Randi that the surgery was delayed and that we would call her when Jeri was out so that she could come and see her.
Dr. Nuchtern came out sometime before 6pm to let us know that the surgery was complete and that Jeri would soon be moved to the recovery area. The good news was that everything went well, there was little bleeding and no need for a blood transfusion. The bad news was that he removed 9 nodules from Jeri's left lung and thought that all but one were tumor. Dr. Murali came by a short time later to see how we were doing. He had already checked about Jeri. He made sure we were doing well and we visited about the next steps. He said that he wanted to begin the next chemo treatments as soon as Dr. Nuchtern said that Jeri was ready. That was expected to be about 5 days. Jeri may not get a break from the hospital for a couple of weeks.
We were allowed to see Jeri in the recovery area around 6:30pm. She was understandably still disoriented from the whole thing but otherwise looked good. She has a tube in her side that is attached to a pump to pressure the lung for a couple of days and then draw on the lung to make sure everything is working. It also serves as a drain tube for excess fluid. She has a chest epidural to minimize the pain. That will allow her to rest comfortable for a couple of days. Randi made it to the hospital in time to see Jeri in the recovery room. Jeri was happy to see her. Jeri was moved to a room in the hospital around 9:30pm. It had been a long day.
While waiting in the recovery room, Virginia and I saw many other kids brought in. They ranged from small babies to kids about Jeri's age. We saw another young cancer patient come in about an hour after we went in to see Jeri. The doctor and nurses asked the girl what she needed for the pain. The girl rattled off the names of the drugs that worked. Virginia and I noted that it was not a good thing that these kids, Jeri included, were so familiar with the medical terminology. We both had tears in our eyes as we thought about it.
I'm glad that Jeri has made it through this procedure and know that she will feel better in a day or two. Surgery is never easy. We hope and pray that this is one step closer to remission for Jeri. Our hearts' ache in knowing that there is much uncertainty ahead.
9/1/2000 - Jeri, Virginia and I went to the clinic today to check on the results of yesterday's CT-Scan. We didn't hear much more than we did yesterday. One spot was smaller, one was larger and a couple more have come to the party. It's unclear what they are without surgery to remove and biopsy the spots. While there is a slim chance that they are benign, it's not likely given the overall aggressiveness that the disease has exhibited. A Bone Scan and meeting with a surgeon are scheduled for Tuesday. We'll find out more about plans for surgery at that time. The debate will be whether to open her sternum to examine both lungs or make a smaller incision and focus on the left lung.
This is devastating news. The only good news in the original diagnosis was that the cancer had not spread to Jeri's lungs. (See 2/24) For all Jeri has endured, this is evidently confirmation that the chemotherapy has not been effective. In hindsight, I suppose we had a signal when Jeri had her surgery and the tumor was the largest that the surgeon had seen. (See 5/18 below). There are two remaining chemotherapy drugs that are normally used for these type tumors. One of them is similar in properties to one Jeri's already received. Following surgery, she'll start on those and we can only pray that this will be the right combination. The steps beyond that involve experimental drugs where the effects on the tumor and the body are not well known. That is when treatment becomes guess work and desperation sets in.
I cannot begin to describe the emotions that I feel right now. I'm an optimist by nature and even though I was heartbroken in the early days following the diagnosis, I had a high degree of hope that this thing could be beaten. I've now come full circle and returned to that early heartbreak but with less optimism. Jeri has taken this news better than Virginia or me. She's only asked that she get a week before having to submit to surgery. I've always thought of myself as a strong person. I had endured a serious medical condition as a child and thought that surviving it would make me strong right now. Not so. I guess everyone has a weakness. It's just a matter of exposing it. Mine is obviously a great fear of being so helpless in protecting one of my children. I need some of Jeri's strength. She's come so far to be denied the prize. There was only one session of chemotherapy remaining before she was to be finished. Now it's like she's starting over. I guess I'll just have to go and get that stiff drink and start over myself.
Addendum - Virginia found an interesting article on recurrent osteosarcoma. Click here to check it out.
7/20/2000 - "Jeri has two tiny spots on her lungs." The thin veil of resolve is torn. Words that we didn't want to hear and didn't think we would have to hear. One of the blocks of sand on which our hopes were built was the fact that there was no sign of metastasis (further spreading) in Jeri's initial diagnosis nor had any turned up in any of the tests up until now. (see 2/18) My level confidence, even though it may not be rational, has been eroded. The good news is that it may be an anomaly in the test since it hasn't shown before. Other kids have had things show and then disappear at the next test. The bad news is that it may be something. The plan now is to continue the scheduled chemo just as fast as Jeri's body will allow and then do the next chest CT as scheduled. The spots will be there or they will be gone. If they are gone, it may be because of the chemo or because they were an anomaly anyway. If they remain, then they will be surgically removed and examined by a pathologist. That means a month of waiting. Jeri seems to be unaffected by the whole thing. I wish that I could say the same for me. I remember the counseling session where we heard how the odds of survival were drastically improved if the cancer hadn't spread. Part of me says that there is no need to worry until we get the results of the next test. Easy to say but hard to do. Dr. Murali said that the anticipation over the next few weeks would be tough. He was right. It is very tough. However, just as there was only one acceptable outcome when this odyssey began, there is still only one acceptable outcome. I'm just pissed that Jeri has to go through more uncertainty....especially when she is so close to completing the planned chemo and getting on with the rehabilitation of her leg.
7/9/2000 - News on Melanie Ellis. Click here.
6/24/2000 - News on Melanie Ellis. Click here.
6/23/2000 - I haven't had a good rant in a while and figured I needed to do something just so everyone would know that I'm still pissed about the whole thing. I should clarify for anyone reading this section for the first time. I firmly believe that it is my right as a parent to be pissed that my little girl, or any child, has to go through what Jeri is enduring. My job is to look after my children and keep them away from harm. This is a demon that you can't see or even know is coming until it grabs your child. It's hard to sit by and watch. OK. Enough for level setting. Let's get on with the events of the day.
We met with Dr. Murali today to discuss the next phase of Jeri's treatment and get some more information about the cancer. We are very fortunate to have a doctor like him to look after Jeri. He's always willing to go out of his way to explain things to us and seems driven toward treating Jeri in the best possible manner. I'm sure that he's that way with all of his patients but it's really nice to feel that he's that way about our child. Anyway, it was, as usual, a day of good news and bad news. The good news was that the tumor was removed with completely clean margins. That means that Dr. Johnson was able to do his job in surgery because he's good at what he does and because the previous chemotherapy defined the boundaries of the tumor. That means that Jeri is free of the cancer in it's malignant or metastatic form. Now the effort turns to the microscopic particles that are circulating around & just looking for a place to grow. The lab results from the removed tumor showed definite areas of necrosis or death. The results also showed areas that had little impact from the chemo. It's hard to put a number on it but it's probably in the 45-50% range. Dr. Murali said that we should not be surprised due to the size of the tumor and the size and aggressiveness of the cancer cells. He had another term that I can't pronounce or remember. (anaplastic - an*a*plas*tic \"an-u-'plas-tik\ adj : characterized by, composed of, or being cells which have reverted to a relatively undifferentiated state <anaplastic carcinomas>, Merriam Webster) That gives further credence to the notion that the tumor may not have been present all that long.
Dr. Murali gave us the roadmap2 for the next round of treatment. It doesn't look as involved as the first rounds of chemo but in reality, is much more aggressive. Jeri will be totally zapped. Her fast growing cells will die, e.g. hair, blood & hopefully microscopic bits of cancer. She will do this in the bone marrow transplant ward of TCH. Once the treatment is over, she'll be given back some of the stem cells that were taken during the stem cell collection process this past week. That will shorten the amount of time that it will take for her body to begin making blood cells again and have the natural ability to fight infection. The process will take about a week in the hospital and 3 weeks at home before she turns around and does it again. She will complete this cycle 3 times. It will take 3 months if all goes well and longer than that if it doesn't. We'll have to continue to be extra careful to protect her from harmful bacteria during this period. That means keeping visits down, ensuring visitors are healthy, keeping things disinfected and avoiding crowds (no retail therapy). One bit of good news is that patients who receive their own stem cells don't have to worry as much about rejection. That means that Jeri can still eat fresh fruits and vegetables as long as the are cleaned well. We'll have to watch and any time she has a fever over 101°, she'll have to go to the hospital so that they can treat her. We have been prepped to expect unplanned visits to the hospital, blood transfusions (particularly platelets) and possibly time in the intensive care unit. On the other hand, she may be one of the kids that has no problem. I just worry when Dr. Murali calls the last chemotherapy easy by comparison.
OK, the next three months will be a continuation of the wild ride. But then what. What long-term side effects will there be. Hearing loss, kidney damage, bladder damage, heart damage and on and on and on are all on the list of possibilities. Jeri tested out in good shape for hearing, kidney, bladder, liver and heart after the last chemo. But this next phase is more aggressive. We pray that she will have a strong enough body and spirit to withstand the next onslaught and come out as good as last time. Then the watch begins. X-rays, CAT Scans and other tests every 3 months for a while. No MRI's since she's got metal in her body. We wait and watch to see if there is any sign of the cancer catching hold and growing again. The first 3 months, then the first year and then 5 years. The object seems to be to go 5 years with no relapse and then she can truly be considered cancer free. I've decided to stay pissed until then.
5/28/2000 - News on Melanie Ellis. Click here.
5/23/2000 - News on Kevin Kyles. Click here.
5/18/2000 - Today has been a long and difficult day. Dr. Johnson began surgery just before 9am. We had to be at TCH by 6am. The anesthesiologist gave Jeri something to relax as we were waiting in the pre-operation preparation area. It was administered through her central line so it affected her rather quickly. She was feeling good as they wheeled her off. She explaining which blood types can be used together to anyone who would listen but mainly toward the anesthesiologist. Dr. Johnson had been by to see us and said that the surgery could take 5-6 hours. We hunkered down for the wait. As we were waiting, Larry Ellis came by to bring something for Jeri. Larry is Melanie Ellis' father whom I've mentioned before.
We received a call from the nurses station about 11am to let us know that the surgery was going well and that the reconstruction phase had begun. Dr. Johnson came out sometime around 2pm to let us know how things went. It was kind of a good news/bad news story. The good news is that he believes that he got all of the tumor that had solidified in Jeri's leg. The first bad news is that there are still microscopic particles of the cancer in her body that will have to be dealt with later (we knew that). He said that the tumor was the largest he had seen and that he had to remove about 3/4 of Jeri's left femur. As a result, he didn't have much bone to attach the prosthesis to and had to use metal plates and much more bone grafting (allograft) than previously expected. The allograft is bone taken from a cadaver that has been bleached and sterilized. It is grafted onto the patients bone. Evidently the joint of the patients bone and the grafted bone is critical to the success of the grafting. It will be a few months before we know if the graft has taken and if it does, it will eventually be replaced by living bone. The allograft was done the length of the titanium rod that extends to the artificial knee. The net result is a longer hospital stay (10-14 days versus 5-7 days), longer time (3 months versus 1 month) for Jeri to remain on crutches and perhaps an even longer time to have full use of the leg. The doctor is confident that the surgery went well and that there is a very good chance of recovery. He cautioned however, that the limb salvage procedure is only as good as the cancer treatment that will follow. He said that he could not seen the tumor because of the nature of the surgery but could feel it. He said that it felt liquefied rather than solidified as we had expected. He said that necrosis of the tumor can also be present when there is liquefaction so we'll have to wait for the pathology results to see how effective the chemo has been and what course will be taken for the next phase. Bottom line is that the visible tumor is gone, the leg should be saved but Jeri is still a long ways from being out of danger.
Jeri spent the next few hours in the recovery room. The anesthesiologist came out and said that the epidural had not been successful and that she recommended putting Jeri back to sleep and trying again. She did so and was able to have a successful procedure. That's important because it will help Jeri to rest more comfortably and not be in as much pain or discomfort when they start moving her leg with the passive motion machine. They also gave Jeri another unit of blood. They had given her 4 or 5 units of blood during the surgery and wanted to give another to ensure that she was in good shape to start the healing process. She was released to the hospital room around 6pm. We were going to get some food for Virginia and Jeri asked for a Dr. Pepper. The nurse said that she had to stay on clear liquids and no solid food for a while so Jeri switched to a Sprite or 7-up. She was starting to wake up enough to show some emotion and at least say a few words. The best thing for her tonight is to sleep and I'm sure she will be more alert tomorrow.
I mentioned above that the hospital stay will be longer than we had thought. Dr. Johnson has delayed use of the passive motion machine until later due to the severity of the surgery. The passive motion machine is something they use to begin moving the leg even before she can do it on her own. That helps to avoid scar tissue problems and aids in the healing process. It is a concern that it was delayed but a relief that Jeri will get some rest. They take pain management very seriously so we can only assume that they will make sure that she doesn't hurt too badly once the physical therapy begins with the machine.
Our whole family is pretty spent right now. We're glad this phase is done and the healing can begin. We're optimistic but realistic about the next phase. We're expecting that Dr. Johnson has done his job well, that complications will be kept to a minimum and that Jeri will, in time, regain the use of her leg. Now we turn again to Dr. Murali to do his thing and get the rest of the cancer out of Jeri's body and do it in such a way that we get our Jeri back. She's a soldier and if it can be done, I'm sure that she will do it. As we've said before, all prayers are readily accepted.
I'm not pissed tonight, just tired. We shall see what tomorrow brings.
5/17/2000 - It's been a long road to get to this point but reconstruction surgery is finally here. You can tell from the regular diary entries that we've tried to keep some normalcy for Jeri and our family. I have to confess that it's not been easy. Tomorrow is merely the next in a series of events that are barreling forward out of our control. Surgery is a significant milestone on several counts. It marks a time when the physical part of the tumor will be removed from Jeri's body. Microscopic particles will remain. It also marks an event where Jeri's flesh and blood will be replaced by cold, hard metal. Metal that we hope will allow her to live on with a high quality of life but nevertheless, a part of her is being removed and replaced with an inanimate object. That's a sobering thought and one that keeps the anxiety level high. We are happy to get to this point but also sad as we head into another unknown phase of this journey.
The surgery itself is straight forward, according to Dr. Johnson. About 1/3 to 1/2 of the lower part of Jeri's left femur will be removed. The soft tissues will be removed as much as necessary to ensure that a clean, non-cancerous boundary is left. The pre-operation chemotherapy was to kill the tumor (tumor necrosis) as much as possible and provide a clear boundary for the surgeon. The pre-operative tests (MRI, CAT Scan, etc.) help the surgeon plan the surgery. We hope that the tumor boundaries are clear and that enough muscle will remain to allow for reasonable strength after a period of exercise (about a year). Dr. Johnson is hoping for about 2/3 but the size of the tumor will be the ultimate arbiter Jeri will have a titanium rod and artificial knee in place of the bone that is removed. It's enough of the femur that she will also have some inert bone from a cadaver grafted to her remaining bone. The bone graft will eventually become live bone as Jeri's own bone growth takes over. It is to provide stability to the titanium rod. She will spend the next 5-7 days in the hospital where they will drain and treat the wound while guarding against infection. She will have epidural anesthesia (usually given to reduce labor pains during child birth) for about 5 days to reduce pain and allow passive movement therapy to begin. I presume they will also use a catheter to drain the wound and keep it dressed. Passive motion physical therapy will be used during this period to reduce formation of scar tissue and improve the recovery time. .
The great unknown at this point is the effect the chemotherapy has had on the tumor. The objective was to kill the tumor (>98%) and define the tumor boundary for the surgeon. The tumor is very large. We are told that size is not related to time. Nevertheless, early indications from the pre-operative tests are that the tumor has responded to the chemotherapy. However, given it's size, it's not likely that the necrosis rate has achieved the >98% objective. Lab tests on the removed tumor will confirm the effectiveness of the chemotherapy and provide the information Dr. Murali needs to propose the next courses of treatment. Future options include more radical chemotherapy (I thought the first cycles were pretty radical), stem cell replacement or who knows what other strange and exotic things.
So you see, the tornado continues to move forward and the ride continues. Once let out of the bottle, it's a genie that cannot be returned. Time only moves forward as do we. Jeri has been tremendous through it all. She's got a goal in mind and fully intends to make it. Randi has coped as well. I'd like to think that it is a testament to a strong family that we have managed to get this far without major incident.
Reality continues to prevail. What was normal 4 months ago is long gone. What was normal yesterday will be gone tomorrow. The unplanned adventure continues to move inexorably forward. I've gotten over denial but I'll never get over being pissed. Kids shouldn't have to go through this. Nothing is worse for a parent than not being able to protect one's child. Others have walked this road before us and others will follow. Some will do it better and some worse. I expect that all will wonder why and the majority will do just as we have.....just deal with it. Thanks to everyone that continues to remember Jeri in their prayers and thoughts. Our combined strength along with hers will get her through this.
P.S. I know Jeri is in good hands with Dr. Murali because some of the other doctors say that he's constantly bugging them for lab reports and other updates on Jeri. That's a good thing.
5/1/2000 - Click here for news on Melanie Ellis.
4/21/2000 - Tough seeing Jeri all beaten down by the Methotrexate. I guess the good news is that it's not as rough as the Doxorubicin and Cisplatin cocktail. Kind of like saying being tarred is better if they leave out the feathers. One of the doctors came by to check on Jeri. He usually deals with leukemia patients. He saw the dosage on the Methotrexate and quickly checked the charts to be sure it was correct. He said it was the highest dose that they give to a human being. Nice. It did it's stuff quickly. Within a couple of hours Jeri tossed her lunch. She lost it 4 times in 2 hours. Poor kid. Seems like one of the Doc's forgot to include all the nausea suppressants in the orders. That meant she had no protection for a while. They are giving it to her now but it's a bit late for that first bad wave. Now Virginia has another thing to add to the checklist of things she tracks to check up on things. I may have to send her to med school so she can support me in my old age. But I digress............ Jeri's pretty wrung out right now. It's tough to see it after she was starting to feel like her old self yesterday. That's progress. One more Methotrexate session next week and then it will be time to start all the CAT scans, MRI's, x-rays, etc. and schedule the surgery. We should get a date for surgery in a couple of weeks. Just need next week's treatment to happen on schedule. Oh yes, in case anyone wondered, I'm still pissed!!!
4/19/2000 - I've had a few people ask about Melanie Ellis and Kevin Kyles. Click here to get the latest.
4/18/2000 - I've got something new to maintain my posture of being pissed. Only this time, it has less to do about Jeri's illness than dealing with the system. I've come to expect screwed up bookkeeping from all the healthcare providers and insensitivity on the part of the insurance companies. I expected that due to my previous encounters with the system. What I've not come to terms with is the seemingly musical chairs of on call physicians, home nurses and others who are watching over Jeri's well being. The latest episode involves blood counts. After being on alert last week, the counts were taken Thursday and the white counts were low but acceptable. The hemoglobin was way too low. Never did find out the numbers for the platelets. Jeri is taking shots of a drug that is to improve her white counts and overall blood production. That was Thursday and they wanted to wait until Tuesday (5 days) for the next blood test. Virginia specifically asked whether Jeri should continue to take the shots until Tuesday. The answer was yes. Jeri took the shots. Today's blood test showed the white counts off the map. The physician reporting the news to us expressed concern that the white counts were too high and that it may delay Thursday's scheduled treatment. They wondered why she was continuing to take the shots. Don't these guys talk to each other. It's a sad state when it's up to us to keep the treatments straight but this is not the first time that has happened. Reality prevails. I guess I'll just have to stay pissed!
4/1/2000 - It's April 1 by the time I've started writing this and I find no irony in that fact. Still waiting on those stages where I go through latter parts of the emotional transition. I've decided to stay pissed on principle, if for no other reason. On one hand, I'm encouraged by what appears to be progress and then discouraged because we just won't know until the surgery in late May. It's hard to stand by and be so helpless when it's my child. My heart breaks when I see Jeri suffering so much from that which is supposed to cure her. It's nothing that other parents haven't felt but that's no consolation. People tell me all the time that they just don't know if they could handle it as well as me. Believe me, they could. You can't do anything except move along with events so you just do it. But it's just a facade. A facade that helps me get through the days in some semblance of normalcy. There's a thin veneer on the surface that says life goes on but underneath the veneer the anguish remains. I can't sit around worrying and I can't make it better so I have to find another way to cope. I do that by just trying to be normal. Things have been happening so fast that it's "like drinking water from a fire hose." You want to make the right decisions but how. The only one I clearly remember as the one that I could actually answer is the question that went something like, "do this to her or she dies." Of course we choose life. It still doesn't answer all the questions about why this has to be to begin with. Since then, it's been a fast moving train and Virginia and I are just along for the ride. The support for Jeri has been tremendous. That helps.......a lot. Thanks to everyone that sends the card to Jeri and to all those that have been kind enough to include her on their prayer lists.
P.S. Kevin was recovering from the surgery and reconstruction phase when he contracted appendicitis. Melanie's brain tumor was confirmed and her parents are consulting with many doctors to find the right treatment plan. I do not wish ill on those kids and their parents but I've allowed myself to feel lucky. Isn't that ironic.......felling lucky that is. I suppose it's all relative.
3/14/2000—Just got home from the hospital. Jeri's in for round two. I'm still pissed. Maybe I'll get to that reconciliation or rebuilding stage or whatever it is. On second thought, I'm really pissed. We learned last night that one of Randi's theater friend's little sister has a brain tumor and had a biopsy done on Monday. Her name is Melanie Ellis and she's about 8 or 9 years old. Her mother and father, Larry and Michelle Ellis helped us build the sets in our driveway for "Little Shop of Horrors" last January. Jeri watched movies with Melanie while we were building late one evening. She was a sweet girl. I saw Melanie and her Dad at the hospital this evening where Melanie is recovering from the biopsy and heading toward radiation treatment and chemotherapy. And I'm really, really pissed. (I think there is a theme developing here,) Pissed that it seems like this thing happens to the good kids. I suppose that getting a couple of weeks head start might let us give hope and encouragement to the Ellis's like Linda Kyles and her son Kevin have given to us (Linda works for Phillips in Bartlesville, America and her son Kevin has osteosarcoma in his upper arm and shoulder. Kevin has just completed his reconstruction surgery and we are hoping that the lab work shows good results.) Anyway, we would ask that those of you who have been so supportive of Jeri to do the same for Melanie and Kevin and all the other beautiful kids who don't deserve these burdens. And now I've got to find a kleenex......
3/1/2000—Just got Jeri home. I’ve over my denial phase and now I’m just pissed. Pissed that this could happen to someone as sweet as Jeri. Meanwhile, we’ve got lot’s of folks with powerful friends pulling for us. Jeri has been the subject of many church services and prayer lists. Some that I know of are the Prince of Peace Catholic Church, St. Ignatius Catholic Church, Jewish Community North, First Baptist Church in Silverton, TX, churches in Bartlesville, OK, Perth Australia, Stavanger Norway plus who knows how many prayer lists. We are thankful to everyone for keeping Jeri in their prayers. It’s a help to her and it certainly helps Virginia and me while we are making the transition from being pissed. Also, last weekend, the Champions Superstars dedicated their performance to Jeri and wore purple ribbons in her honor. Go Superstars!
Jeri just says that her goal is kill this thing and get back to dancing. Leave it to Jeri to keep it simple and to the point.
2/27/2000 & I just got back from the hospital. I'm somewhere between denial and angry and headed toward depression while waiting for rebuilding. I want to strike out at the cause of this thing but, obviously, there is nothing to strike. I cry occasionally at the shock of how someone so young, caring and pretty (inside & out) and innocent should have to go through this. I take small solace in knowing that others have faced the same thing. Like any parent, I'd give anything to trade places but I can't and that hurts too. Jeri gives me strength because she is determined to get through this and get her life back. Virginia, Randi and I are determined to do anything we can do to get it back for her. I can't wait to get through the anger stage, through the depression and into rebuilding. Anger sucks;-( Our family is strong and our friends are supportive. I'll get there and we'll all make it happen.,
This page last updated: June 13, 2006