EMMA'S STORY
EMMA
June 20, 1997 to September 10, 1999
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The Beginning August 22, 1998. Saturday. I took Emma to the emergency room in Willmar, Minnesota. She was not lifting her right arm, had a low grade temp, and was generally acting tired and listless. She was diagnosed with an ear infection. X-rays were taken of her clavicles to rule out a broken bone. No sign of injury, she was diagnosed with a possible sprain. August 23, 1998. Sunday. She did not sit up in bed this morning and I noticed some tremor in her right hand. A first rate crawler and cruiser, she appeared to be favoring her left side. It was Sunday, so I took her back to the emergency room where they performed a CT scan of her head. Then came the horrible news. We looked at the scan with the doctors who did not have to point out a large lesion on the left side of her brain. It was massive. Fearing possible seizure, we were flown immediately by helicopter the 100 miles to Fairview-University Hospital in Minneapolis. In those 29 minutes, beginning at 8:00 p.m., Sandy and John, monitored her vitals, Emma slept and I gazed between my beautiful daughter and the bright starlit August sky. No words can describe the emotions that race through a mother at a time like that. Judith, a friend from St. Paul, met us at the Intensive Care Unit. About 3 hours later Gary arrived by car with two other friends from Spicer, Judy and Diane. Emma was immediately given decadron (steroids- to reduce swelling) and Phosphynetoin (an anti-seizure medication). An MRI was scheduled for the following morning to determine exactly what the Neurosurgeons would have to remove. August 24, 1998. Monday. By 8:00 a.m. my mother, MaryEllen, had driven the 5 hours from Iowa. Throughout the day, Emma could not eat or drink. It was not until 6:00 p.m. she tasted her first morsels. She devoured her meal and (thanks in part to the steroids) she has maintained an incredible appetite for macaroni and cheese, hotdogs and apple juice! 8/25/98. Tuesday. They installed a Hickman catheter through her carotid artery to her heart which came out her chest. It was huge. It also had to be specially ordered as it was made of a special synthetic fiber that would withstand a stem cell harvest. They realized at that time what we could not. Chances were very likely this tumor was not benign and even if it was, intense chemotherapy would be necessary to kill it. They also performed an arteriogram. This is like an angiogram and is where they shoot dye into her vessels through a vein in the groin. This was necessary so that the Neurosurgery would have a roadmap of the vessels in her brain. They wanted to perform surgery on Wednesday. Next came the devestating news. First, what we already knew, the tumor was massive. Next, it was also vascular, which meant it had an ample supply of food for growth and nourishment. Finally, the tumor was wrapped around the main vessel in the left side of the brain. This made surgery very dangerous and the possibility remote that they would be able to remove all of it. This did not mean we would forego surgery. The pathologist would need a biopsy to assess the biology of the tumor. We prayed the tumor would be a liquid substance that could be more easily aspirated. As if that wasn't enough, later that evening, Emma's right leg was cold. The remote risk of the arteriogram is that a clot could form at the insertion point. It did. She was given heprin (blood thinner) to prevent further clotting and we had to postphone surgery to Monday since you can't operate on a vascular brain tumor while she has blood thinner in her body. By midnight her leg felt warmer. She had developed adequate collateral blood flow to keep the leg alive. The clot remained visible the next morning by ultra sound. To this day we don't know if it has dissolved. It was decided that we could not wait any longer for surgery, so she was taken off the heparin and we waited for it to get out of her system. 8/27/98 Thursday. Ultrasound revealed no change in clot. Began to have trouble with Hickman. Unable to draw blood. Learned that the tube was not in the heart and clots were probably forming on the end of the tube in her vein. We were transferred out of ICU to pediatic oncology ward. There we began to meet others from the Spicer/NewLondon/Willmar area. Five of us have children who are receiving treatment for very serious conditions, three of us with cancer. 8/28/98 Friday. The Hickman is not working. They can't draw blood. Our second trip to CV Radiology for an X-ray at 1:00 p.m. revealed a clot on the end of the line. We knew it would not take her through surgery and would have to be replaced. But what to replace it with??? 8/29/98 Saturday. A long day for Grandma Clayton. She had gone home and would be returning for the surgery on Monday. (or is it Saturday, or is it???) Friends came by and took turns keeping our spirits high. Emma was happy and eating well so we took advantage of the late summer sunshine with a walk along the Mississippi River. (And up the stairs, Allison, Kristi and Doris!!) The support, cards, flowers and prayers kept coming and well wishes from all over the world were at work. 8/31/98 Monday Surgery Day. Gary and I took Emma to PreOp at 7:00 a.m., She was in the Operating Room at 8:28 a.m. The plan: Replace the Hickman catheter that wasn't working with the same type of line and resect the tumor. Over the next 14 hours we waited. A room of friends and family waited. The computerized schedule showing every patient in surgery that day monitored their discharges to recovery. We kept waiting. As the day wore on, families were relieved and left the room, but we kept waiting. Even the volunteer left for the evening and we continued to wait. Bless everyone who came and thought of us that day. (And Liz for the best pizza I've ever tasted). Through all of this Emma was lying in a sterile, "state of the art" MRI equipped operating room surrounded by strangers who by now knew every detail about the inside of her head. At @11:30 p.m. we met with Emma's neurosurgeon, Dr. Cornelius Lam. In our previous visits he explained all the results of the arteriogram, the MRI and the risks of Emma's surgery. He inspired great confidence and I thanked God many times that Emma was in such excellent care. They were able to remove about 1/3 of the tumor. He was sorry he could not get more, but she had already received a complete transfusion and further surgery could mean she would not clot. The tumor was rock hard. Parts appeared to be benign and parts malignant. We would have to wait for the pathology report. We looked at our child in her bed, head bandaged, one tube draining the excess cerebral spinal fluid out of her head, one tube ventilating her lungs as the anesthesia wore off, more tubes giving her nutrition and medication. I only wanted to hold her and heal her. She rested. I did hold her and she did heal. One by one, the tubes were removed. 9/3/98 Thursday. 10:00 a.m. Dr. Lam called from surgery, he had the pathology report, but wanted to come over and talk to us about them this afternoon. I called Gary at work so that he could be here for the news. 4:00p.m. Dr. Lam gave us the news. Atypical teratoid tumor. Malignant. He said there have been 3 cases in Minnesota over the past several months. It is rare. What they may have determined is that it forms when the child is still in the embryo stages. This makes it complicated. It is an aggressive tumor. Now they want to perform a spinal scan to determine if the tumor has spread through the cerebral spinal fluid. It had not. In the days to follow, we learned from an ultasound that all of her organs looked fine. (She does have a remarkable kidney which seems to be doubling, but cannot say this is good or bad.) Later that day we met with Dr. Lakshmanan Krishnamurti, MD. We discussed the pilot study and chemotherapy protocol that is best described in Michael's page. It is the same protocol. 9/4/98 Friday. They removed the tube from her head today. Still no stool since before surgery. She seemed to be very itchy about the eyes, mouth and nose. At 7:00p.m. she took her first bottle, just a few swallows, but cause for celebration, nonetheless. 9/5/98 Saturday. We returned upstairs to pediatrics. Emma is making a dramatic recovery after surgery. The understatement of this whole experience is "Kids heal fast." In my opinion it has a lot to do with attitude. She does not understand cancer. She gives no weight to a prognosis. There is nothing to interfere with her recovery except the limits on her own will to survive and medical science. Over the weekend I noticed some condensation on the dressing covering the Hickman exit site. By Wednesday we were becoming all too familiar with CV Radiology (CVRad). The line was covered with a fibrin sheath. We would have to clear the line with a urokinase drip over 12 hours before we could go home. 9/11/98 Discharged. Home for the first time. Emma was thilled. Diane, Megan and David had supper waiting and helped unpack the truck. Like the old days, at 8:00 p.m., Emma smiled with contentment as I laid her in her bed and she went promptly to sleep until 7:00 a.m. 9/15/98 Tuesday. Back to the hospital. Thanks Betsy! It's time to start the Chemotherapy. This is the first phase of Emma's protocol. In it, there are three 21 day cycles. The first three days she gets 4 chemo drugs. These drugs kill rapidly growing cells like hair cells, fingernail cells, white blood cells and, of course, cancer cells. Then we go home where she gets frequent blood draws and one more shot of chemo each of the two remaining weeks in the cycle. This should be done on an outpatient basis in Willmar, but more about that later. Her "counts" (number of white blood cells, platelets, and hemoglobin) is most critical now. When they are at their lowest, she is at risk of colds, infections etc… as there is not anything to fight with. We began this visit where we left off. In CVRad for a line dye study. More fibrin sheath and more urokinase meaning a one day delay in the administration of the chemo. 9/16/98 Wednesday. We started chemo late in the day. Wednesday night was awful. Emma was up at 10:30 p.m, 12:30 a.m., 2:00 a.m. then 3,4,5 and 6. By 7:00 a.m. the doctors determined we had been a little ambitious in the steroid taper. We were weaning her off too fast. They gave her a loading dose of 2 mg and she was fine for the rest of the chemo. (we are still trying to wean her, but at a slower rate.) 9/19/98 Saturday. Today was a day of hurry up and wait. She finished off the IV at 3:00 p.m. and we left the hospital around 4:00. Mom got a crash course on the GCSF IV and picked up the medication, IV tubes and various sundry items. Diane drove us off into a grand thunderstorm. We had to pull over for a short spell while sheets of rain drenched the windshield. It was a welcome drench. Emma enjoyed the ride, At home I sorted and organized the bathroom into a medical closet. Rachel and Shari will be our home health nurses. They will be coming to the house to draw blood for tests. It is reassuring to have such competent people so close to home. Our instructions were to return to Minneapolis for our first outpatient visit. The line, you know. At 10:15 p.m Emma went to bed, but not until after a walk around the deck where she dozed off looking at the river and the trees. She is very happy to be home after her first round of chemotherapy. 9/23/98 All went well at home. The line worked. Joy drove us the 100 miles and entertained Emma while I talked to the docs. Before they administer the second dose of chemo. we have to make another trip to CVRad for yet another dye study to check the central line. Hi guys! Sure enough, fibrin sheath coated the line. No Chemo until it clears. Outpatient turned into inpatient, or impatient as the case may be. We started on a 12-hour urokinase drip to clear the line. Another dye study 4 hours into the drip revealed clear lines with a small amount of residue on the red port line. Quick, huh? 9/24/98 Administered the chemo (vincristine) today. Counts very low (White Blood Cells .6 Hemoglobin 7.7), but she returned home. 9/25/98 Home health came to draw blood. A clot (or just blood) was visible in the red port. This was too dangerous to try and remove at home so we went to ER in Willmar. The nurses could not draw blood from the blue port. We needed blood tests immediately as Emma had a 100.5 temp, and the exit site of her line was very red. It had to be drawn from a peripheral iv in her foot. That smarts! She was started on strong antibiotics. Less than 24 hours after we were discharged we began another week that was. Back in Minneapolis, they got the lines to work and started her on a transfusion as her hemoglobin was 7.8. She was also receiving antibiotics and heprin to keep the lines open. (Without the line we are lost!) By the next day her counts were up. By Tuesday, 9/29/98, Emma was well on the mend with a White Blood Count of 20.9 and hemoglobin of 10.7. This marked a watershed for us. Throughout the first phase of this protocol, we were intending to harvest her stem cells. CD34's to be precise. This is the cell that is the mother of all other cells. It is to be harvested through a process called peripheral blood stem cell collection. It was to be performed after the first and second cycle of the first phase (Induction) after her counts returned to normal. It would have to be repeated if there were not enough blood cells from the first two harvests. This was the first. But we have a problem. Remember the Hickman? The central line causing all the problems? Her body rightly saw it as a foreign intrusion and protected against it. But how could we keep fooling it for 63+ days??? For now, she remains on a constant heprin IV drip to keep the line open for medication and the harvest. 9/30/98. Wednesday. We hooked up to the stem cell harvestor. (I'm sure there is a name for this machine, but I can't tell you what it is.) It draws the blood, separates out the stem cells and then returns the blood. All of Emma's blood cycled 6 times through this machine. This took 3 hours and 15 minutes. Part of the time she slept and part of the time she ate lunch. (Hot dogs and macaroni, of course) At the outset, we knew we needed 15 million stem cells before we could get rid of that line and definitely before the second phase of chemotherapy. That phase is more toxic and will eradicate the bone marrow. She will need these cells to survive. No one could believe what happened. We didn't get 15 million stem cells. We got 28.07 million. Nearly twice what the protocol required. Twice!!! OK, so Emma is better, we don't need any more stem cell harvests and after one more dose of chemo tomorrow morning, we are done with this wonderful, huge, stubborn, problematic line. At noon it will be removed under anesthesia and we can go home for a week until the second cycle of phase I begins. Mom, are you reading this? Sorry, but I have to tell it. Wednesday night I took a break. My mother, God Bless her, was giving me a break and rocking Emma. She came and helped us through this roller coaster week, (not the first time!) pushed Emma around the hospital and despite her rheumatoid arthritis made almost 60 pins. (our Circle of Friends are wearing small gold safety pins attached to a circle of tiny beads and pink bow in support of Emma's fight. Thank you.). When I returned to the room I saw her sitting in the hallway, pale and ashen with nurses rushing in and out of Emma's room. Terror. The line came out. Completely out! No pain or crying until Mom yelled help and 5 people descended on Emma. The wound was dressed and we were back down in Radiology to make sure she was ok. There was no bleeding and for the first time in weeks we danced with no tubes. NO TUBES!!! I can only speculate that my dear daughter had enough and said forget this thing, will you? 10/1/98 Poor Grandma. Still scared to death and feeling guilty. The good news this morning is that the vincristine can be administered by peripheral iv. (before central lines, all chemotherapy had to be administered this way! To those who went before, I am sorry!) "One Poke Nancy" did the job. Thanks Nancy!! We were done. Surgery was canceled. (think the insurance company will pass some of the savings on to mom?) Now we are home for one whole week. No tubes, no blood draws only some oral meds to keep her healthy. We continue to work on physical therapy. Since the first day of this saga, Emma has had little or no mobility on the right side. Now, since the surgery has relieved the pressure, it is slowly beginning to return. We stretch the muscles daily and keep her focused on using these extremities. It is slow and sometimes painful for her, but we are confident she will regain her strength and movement in that side. Oct 7, 1998 We begin the second cycle of the induction phase tomorrow morning after surgery to replace the central line with something she can tolerate better (hopefully). The stem cell harvest went beautifully and we collected nearly twice the number the protocol required!! Praise God!! October 14, 1998 As you know from the last update, we went back to the hospital on Thursday, 10/8/98 for a new line and to start the second round of chemo. They wanted us at the clinic by 8:00 a.m. which meant we had to leave home no later than 6:00 a.m. Nothing to drink after that for Emma until after surgery which was supposed to be at 10:00 a.m. Another day of hurry up and wait. She did not get in to surgery until 12:30 p.m. Thanks to a jar of bubbles and another little boy (Johnathan who was having eye surgery), the three hour wait in pre-op with just an empty bottle was not so grim. They said it would take 30-45 minutes. At 3:00 p.m. we finally got word she was in recovery. I couldn't wait to get down there with a bottle of juice! She was very happy to see us. The line went in ok, but the right side of her neck and shoulder were multiple shades of red which turned to a nasty bruise. The new line is much smaller and lighter and has been a welcome change from the first one. She did require some narcotics (Nubane) to ease the discomfort the first couple of days. We started chemo at 8:30 p.m. which meant she would require IV changes until 4:00 a.m. They were able to start earlier Friday and Saturday night, but she still needed a blood transfusion and a 24 hour fluid IV flush before we could go home. Needless to say, the nights were pretty long. After the pain from the line insertion began to diminish, she started to get back to her happy self. We had surprise visitors on Friday afternoon. My brother, Ken and his family Ellen, Ben and Adam, (from Iowa) were headed to Little Falls, MN for Ellen's brother's wedding. It was the first time Emma had seen them since this summer! She was happy to see them and so was I. Congratulations, Danny! Except for the evening interruptions, all went well.. We were able to get outside every day for awhile and renew old acquaintances. (including Ronald McDonald). She is getting much better about having her temperature and blood pressure taken. It is easy to forget that through all of this she is still growing and developing and learning. She is always surprising me with how much she understands and is becoming a real trooper! (as if she wasn't already!) She also got braces for her right foot and hand. We want to keep them from getting too tight and these devices will keep them in the proper position. I have noticed great improvement since using them and am encouraged by better mobility with the right arm. It is slow, but I am sure it will come! We got home at 10:00 p.m. on Sunday night and are not scheduled to go back to the cities until the end of the month. Everything else can be taken care of on an outpatient basis in Willmar and with home health care. Of course this all depends on how she does while her counts are low. They should reach their lowest point by this weekend. Pray for no infections! I also received some special emails. Johnathan's dad (see the link on Michael's page), Gregg Parker, sent a very kind message from Texas. Keep them in your prayers, they are in ours. At present, all is going very well. Starting yesterday, she has been the happiest and calmest since all of this started. We won't know whether the chemo is shrinking the tumor until the next MRI, scheduled for sometime around Mid-November. Keep praying! P.S. I have not had time to thank everyone personally yet, but want them to know how much their cards, letters, emails and support have meant to us. In particular, thanks to Dave Schutz for sharing Michael's website and making this information available to those who care so much!!! We are thinking of you Michael! October 15, 1998 It is Thursday, again! I can best describe the current state of affairs with a wrestling/football analogy. Three periods and two halves. We are in the middle of the second period of the first half with Emma's chemotherapy. We scored a major touchdown in the first period and seem to be holding on to the ball this one. Went to outpatient clinic in Willmar for a shot of vincristine and to give a little blood. Precious little, but no matter, today it worked! Praise God!! Emma is still making the rounds with Gary, so I better make hay while the sun shines. (It's raining, by the way!) Thanks for your prayers! October 18, 1998 It is Sunday and I am writing from the hospital. We came down Saturday A.M early, as Emma was having nosebleeds. Her platelets were very low so we came down to refuel. Naturally, the line did not draw, so we found our way back to CVRad for a dye study. Yes, a fibrin sheath. Yes, a urokinase drip. They wanted blood before they started the uokinase, but since the line wasn't working, we headed for the treatment room for a poke. Yuch! Megan tried one last time to get it through the line, another miracle. She gave us 10cc's, no poke. Go figure, huh? The lines were working fine by late evening. Her counts are at their lowest, so they gave a blood transfusion. We thought we would go home this morning, but she spiked a temperature so all bets were off and we started on antibiotics. It is almost 5:00p.m., and despite a rocky start to the day, she is feeling great and the temp is gone. Despite this, we will have to stay for at least 48 hours. As pooh would say, "Oh, Bother!" On the other hand, given the circumstances, we are glad to be here! Thanks for your continued prayers and support! October 22, 1998 It is Thursday. I left off late Sunday afternoon and must tell you it has been another long week. Monday her line was sluggish again, so we tried a different method of infusing the urokinase. This time it was not given by a slow drip, but rather, shot into the line all at once and left to sit for an hour. Sounds like liquid plumber to me! It worked. Unfortunately, she got another nosebleed. While her platelets were still low, they think the nosebleed may be attributed to the urokinase. (anticoagulant) Even though she no longer had a fever, they kept us there to monitor her situation and continue with antibiotics. They were also watching a blood culture to see if anything grew. It didn't and her counts started climbing by Wednesday morning. By late afternoon we were discharged. Since she was due for her weekly shot of vincristine (outpatient) the next morning, Gary and I decided to get a room at a nearby hotel for the night and relax. For the first time all week, Emma slept through the night and so did I. This morning, after a short walk to the clinic and a shot of vincristine we were off to the Como Zoo in St. Paul. Emma saw lions and tigers and bears, oh my!! It was a beautiful autumn afternoon and she drank up plenty of sunshine then slept all the way home. Milestones: During the week she gained a better range of motion in her right arm and actually grabbed onto my fingers, stood up and took a couple of steps. The smile she gave when she did that was priceless!! We now have another week of home and healing before we go back for the third and final period of the first half. While we are there, we will be celebrating Emma's second Halloween with some very special friends! Good luck tomorrow, Michael! November 02, 1998 A week ago last Friday we started a glorious week at home. We all went to Pilgrim Inn in Regal for supper with a restaurant full of loving, caring friends. She smiled and ate cheese pizza better than she did all week. We spent the weekend and early last week enjoying the autumn sunshine and what was left of the colored leaves. She had her last dose of steroids on Monday. By Wednesday, she didn't have to take any meds! Hurray. We returned to the hospital last Thursday for the third round of chemo. Grandma came up from Iowa this time and was a great help. This round did not go as well as the first two. Without the steroids, it seems the zofran was not as effective at controlling the nausea. She lost her appetite and did not even enjoy the bottle as before. Her spirits were just as high, though, and she was a real trooper. We enjoyed Halloween in the hospital and Emma dressed up like a dalmation puppy dog. Very cute, she was! There were lots of special visitors to make the stay more enjoyable. Emma met Crunch, the Timberwolves mascot and some special kids brought halloween bags of goodies. We got home yesterday afternoon and, once again, she had a restful nights sleep in her own bed. She still hasn't regained her appetite, but is full of smiles and more active than ever. She has started walking, holding on to my hands and is extending the fingers on her right hand to grab for things. All of this is GREAT progress, so were not complaining. Now we wait for the counts to go down again. Hopefully she can make it through remainder of the 21 day cycle here at home. The next scheduled hospital visit is a big one. Thursday, November 19 she is scheduled for a neuropsych exam and Friday, November 20 is the MRI. We will then have some idea what is going on inside her head. We start phase II of the chemo protocol on Friday, as well. The plan is for two days of chemo (Friday and Saturday) then on Monday they will start the stem cell rescue. Thanks for the prayers and continued support. P.S. Happy Birthday to Michael this Friday!!! We are also sending special prayers to Jonathan who has been having a pretty tough week! November 8, 1998 It is 4:30 a.m. on Sunday and Emma needed something to do, so I told her to write an update: Hi, everyone. Mom and I are in the hospital. We came here last Thursday to get a transfusion since my hemoglobin levels were very low. Friday we got platelets and since I did not have a temperature, we left for home at 6:00 p.m. Friday. At 9:00, just as we were getting settled at home, I spiked a fever and was off to Willmar ER for antibiotics. Done there at 2:00 a.m. we were back here by 4:30 a.m. Mom was pretty tired, but I slept most of the way. I am pretty happy, but kind of tired, so I think I'll go back to bed. I'll probably get to go home on Monday or Tuesday. It's now 10:00 a.m., it snowed this morning for the first time. Not much, but definitely beginning to look like winter. Emma had a nosebleed that lasted over 1/2 hour this morning. She is sleeping now, so I can finish this update. Her platelets are low, so she is getting more this morning. Please remember Jonathan in your prayers. You can check his recent updates for details. Love to all. LeeAnn. November 16, 1998 Our hearts and prayers are with the family of Katherine Flanders. God bless you all and give you peace at this most difficult time. We are with you in spirit today. Sorry it has taken so long for this update. It has been a long week. As you know, last Thursday we found ourselves back in the hospital where she received blood and platelet transfusions. Her counts took longer to recover this time. Tuesday night was the scariest. She never reacted to blood products before, but Tuesday night she received platelets and had a reaction. She got chilled and shaky, her fingers and lips turned blue. Once they stopped the transfusion, she got better without medication. I had been warned that some kids react, but they never said how scary it could be!!! It wasn't until she started feeling better that I realized how scared I was! She was at dangerously low levels until Thursday morning when they and by Friday morning, her WBC was 5xs higher, so after a shot of Chemo we headed home. The poor dear has not eaten much of anything for over two weeks. She lost her appetite during chemo and has had diarrhea ever since. She would only drink clear liquids which give her electrolytes, but no calories so she lost about 2 pounds of the four she gained since her first hospitalization. Now that we are home, she is taking pediasure, but no solids yet. Pray that she regains her appetite. The next step could be IV nutrition or a feeding tube. Developmentally, she is growing at an amazing rate. She is using her right side better than ever and even makes a good effort at crawling. Her assisted walking is great and she much prefers that as her right side is still weak. She is also beginning to communicate in new ways. She shakes her head yes and no and points with either hand. She has maintained her pleasant attitude and has melted many hearts with her toothy grin!! I am hoping to get some current photos on the next update which I hope to get out before we return on Thursday. Also, pray for Aunt Norma who had surgery November 4, 1998. Get Well Soon!! More later, and thanks for your continued prayers and support! LeeAnn November 20, 1998 We came down to the hospital yesterday for Emma's neuropsychological evaluation. I guess she passed. The results were as expected. She is delayed in speech and language, and it is recommended she receive some assistance in that regard. She is developing alternative methods of communication and, all things considered, doing very well. Of course I think she is exceptional and am pleased with her progress each passing day. This particular day, I am pleased to report the results of the MRI are positive. Prior to surgery the tumor was approximately 6cm in diameter. After surgery it was reduced by approximately 1/3. Now it appears the remaining portion has been reduced by 50-75% with chemotherapy. Praise the lord and pass the Thiotepa! On to phase II. Emma has finally gotten over the diarrhea and is drinking carnation instant breakfast, so we may have stalled off another problem. Hopefully she will retain her appetite for this during chemo. In addition, we are thinking alot about Jonathan and his family. He's had a pretty tough week and we really want him to make his party. Hang in there tough guy!!! More later. Thanks to all! LeeAnn Thanks for your prayers. I believe they are working. November 26, 1998 It has been rather hectic, so I'll give more details later. The short of it is the stem cell rescue went great and we came home Tuesday evening. Emma is doing great and we are headed to neighbor Judy's for a big holiday dinner. This day takes on more meaning than ever before. Thank you God and everyone who has cared for us. We have been blessed. LeeAnn December 03, 1998 Before I could finish the details of the last update, we found ourselves back in the hospital. We did manage to stay home through the weekend, but came down monday afternoon for platelets. We began this on an outpatient basis as she had no fevers. After a short stay in the clinic, we headed to Ronald McDonald house for the evening as she needed blood the following morning. Just as we settled in for the evening, Emma got sick and spiked a temp (102)and so we ended up spending the night in the hospital. They gave her the transfusion that night and again the next morning. She had a pretty rough night and Tuesday morning. By afternoon, however she started feeling better. Even though her counts are still low, she seems to have good energy and is her usual smiling self. Unfortunately, we can't keep anything in her stomach. We started her on TPN, an IV nutrition, as she has not really kept anything down for over three weeks. The appetite is coming back, but it doesn't help if she can't digest it. We are asked to consider a feeding tube as it is probably better for her than the IV. To do any good, however, it will have to be placed beyond the stomach in the intestine. This will require sedation and another trip to radiology. On a good note, Emma had another kidney test today. Everything came back fine. Thanks again for your prayers and support. We are also praying for Jonathan and his family. He has a recent update, so you may want to check his page. LeeAnn December 14,1998 I must apologize for the delay in getting out this update. We have enjoyed a very long and much needed rest this past week. Emma's counts came back early in the week and we spent the remaining time with friends and getting ready for Christmas. The main difficulty now is her appetite and ability to digest her food before getting sick. We started TPN, an IV nutrition she receives over 10 hours at night. This does not interfere with her daily routine and she has tolerated it very well and is even gaining a bit of weight. She looks great. The puffiness is gone from her face and we look forward to posting a Christmas photo. In all other respects, Emma is doing great. She gains mobility every day and is even growing more independent as she entertains herself with toys and exploring the house by crawling and in her walker. She moves much more easily around furniture and laughs out loud on a regular basis. She loves the Christmas lights and frosting on the cookies. (Better than nothing, I guess). Today we are headed back for Round 5 of 6. Don't really know what to expect after that, but until that time, we are praying for her body to continue to withstand this treatment. For Michael and his family we rejoice in the wonderful news of his recovery and for Jonathan and his devoted family we are in constant prayer for their strength and for that miracle. More later, LeeAnn Monday, December 21, 1998 We started last week with two days of chemo. This was round 5 of 6. Since she is not scheduled to get the stem cells until Thursday, we got a pass out Wednesday evening and went to the Hollidazzle parade in downtown Minneapolis. Although she was very tired, I think the trip was worth it. She enjoyed the lights and fresh air and it is always nice to get away for awhile. The stem cell rescue went great, but Emma's vomiting got progressively worse during the week and it was decided to discontinue the TPN as I finally agreed to the placement of an NG tube on Friday morning. This tube enters her nose and extends past the stomach into the intestine. We will be feeding her through this tube with predigested formula until her bowels have been rehabilitated and she regains her appetite. The procedure was performed with sedation, but it had little effect and she fought the placement. It is heartbreaking to put her through it, but necessary if she is to remain healthy. She adjusted remarkably well to the tube. We got home Saturday evening. It was a long drive home as Emma was sick to her stomach and the last 45 minutes required frequent stops! The vomiting continued through Sunday. She cannot tolerate her oral medication and is not keeping anything down. We started her on IV fluids and are hoping she will tolerate the tube feeding at a slower rate. Last night was a better night. She only got sick once and slept in relative comfort. It was a difficult week for many reasons, but the defining reason was certainly the loss of Jonathan. We pray that the miracle of his life will comfort and sustain the Parker family. Peace, LeeAnn Merry Christmas! December 25, 1998 Well, we found ourselves back in the hospital monday night. Emma spiked a temp and we started back on antibiotics. She had a pretty tough weekend, but has rebounded beautifully and enjoyed an exceptionally happy christmas. We were surprised by a visit yesterday from Emma's cousins, Ben and Adam, Aunt Ellen, Uncles Ken and Mike and Grandma Clayton. The whole family together at Christmas! What a gift. I must also say, being in the hospital at Christmas is not all bad. No dishes, housekeeping, or expectations. Lots of kind people with generous hearts make sure the kids get all their hearts desires. Emma was no exception. Monday we meet with Radiation oncology to discuss what may be the next step in her treatment. We expect to get a few days at home before the final round of chemo January 4, 1999. Finally, we again thank all of those who made this such a special Christmas and for everyone who has sent gifts, cards and support. I am very behind in my "thank you's" and at this rate, I don't know if I will ever catch up. We appreciate you all so much! God bless you. LeeAnn Happy New Year! January 1, 1999 Got home Tuesday afternoon and have enjoyed a marvelous New Years holiday. Emma has been feeling great (except for occasional vomiting, but afterwards, she is happy as always.) We are still trying to get switched from TPN to tube feeding. Both are running at present and she is still on antibiotics due to a positive culture immediately prior to the last admission. We have a medical arsenal that just doesn't end. I highly recommend to anyone who ever goes through this to get organized early. I find the plastic chest drawers work great. Between medicines (iv and oral) and dressing changes and line maintenance, we are well stocked. Her room at home has just about everything we get at the hospital. (except the additional support staff) Thanks to a terrific home care agency and a little ingenuity we are able to keep Emma's life as normal as possible. We met with the radiation oncologist Monday. They are recommending full brain and spine radiation. They want to make sure no cancer cells are left floating around in the cerebral spinal fluid. The risks associated with this therapy are considerable and I am still in the information processing stages. Any body with information they want to share would be appreciated. Have fun in Disney World, Michael!!! LeeAnn. January 11, 1999 We are home. For how much longer, we don’t know, but we are home. Emma had a long week, but all things considered, it was a good one. Where to begin? Gary took her down last Monday to begin the last chemo of the protocol. That evening, she lost the feeding tube. Tuesday afternoon she was sedated and the tube was replaced. That evening we quietly celebrated the end of the protocol. She did great and was in good spirits. Wednesday night, however, she threw up twice. Each time the tube came out a bit. Each time, we went down for xrays. The next morning I was told the tube was in her stomach and had to be repositioned. That afternoon she was again sedated, but as soon as they saw the picture we realized a mistake had been made. The tube was properly positioned. The sedation had been for nothing. Needless to say, I cried. Not to end the day without another reality check, Emma went for a stroller ride without me. She came back with about two inches of tube left in her nose. I just shook my head in disbelief! After all that I decided we could dispense with the feeding tube for now. Emma is back on TPN (IV nutrition) until one of two things happen. I get the courage to try again or she starts eating. Lets hope for the latter.fn1 The rest of the week went better and Emma is very happy to be home. We debated whether we should stay in the cities to avoid bad weather and an emergency room visit. We elected to stay here and keep a close eye on the situation. We will probably go down tomorrow to be on the safe side. Her counts are still pretty good and she is thriving here. She has started taking steps alone and is very proud. So are her parents. We are still educating ourselves on the next step. Will let you all know when it has been decided. The MRI is scheduled for February 2. Another big day. Best to all of you and thanks again for your continued prayers and support! LeeAnn. fn1 At the insistence of my mother I must add two pertinent details to my last update. Twice before this, the tube came out in my hands. Once completely, the second enough to warrant an ER visit in Willmar last Saturday. It is so easy to underreport maternal boo boo's! January 13, 1999 This is Emma's Grandma, Clayton. LeeAnn has her hands full, at the moment, and ask me to do an up-date. Counts were down Tues. the 12th, and off they went to the clinic in Minneapolis for platelets. No fever, no hospital admission. Ronald McDonald house put them up at the Best Western. Early Wed. AM Emma spiked a fever and by 3:30 AM were admitted. This is the longest Emma has kept a temp. At the present, Wed. eve., she is getting TPN, platelets, RBC, and antibiotic. Always with our Thanks, MaryEllen January 14, 1999 10:00 P.M. Emma's temp. spiked, again, early Wed. evening. She had a seizure, aprox. 7:00 P.M., a cat-scan was done and they were moved from 5-B to 4-E. The scan didn't show much different than the last one done. A yeast culture shows a fungus and she is on anti-biotic. Thurs., a lumbar tap came up clean. Platelets are still low, but the body that fights the fungus also works against the platelets. LeeAnn hopes Emma will be able to have more platelets this evening. I talked to LeeAnn at 4:00 P.M. for this up-date, and Emma's temp. was 105.6. She was on a cooling coil and sleeping. Plans are to put Emma back on an anti-seizure medication. Prayers for the anti-biotic to work on this fungus, or there is the possibility the line will have to be removed! With Concern and always our Thanks, Grandma Clayton January 15, 1999 My 14th up-date was obsolete before it left my computer and flew to G'pa Schutz! Things either go too fast or too slow. It was decided to pull the line aprox. 7 P.M. Thurs., and Emma was taken to surgery. There she was given an alcohol bath and her body temp. reduced. The line was removed, but a temporary one was inserted. This fungus can last as long as 4 weeks! Diarrhea remains a discomfort for Emma, and a concern to LeeAnn. Fri....This news comes from LeeAnn's sister-in-law, Ellen. Lung X-ray will be read this evening, and they will be doing a cat-scan of the kidneys, spleen, and liver yet tonite. Emma is getting platelets, altho her temp. is 103. They are watching Blood pressure and she is at 90% oxygen on the ventilator. I'll up-date, again, when there are changes. G"ma Clayton January 16. 1999 LeeAnn called Fri. 8:30 P.M., one of those whispered conversations from Emma's bedside....temp. NORMAL, BP, NORMAL, still on the ventilator and sedated. X-ray shows some adema around the heart, to be expected, and scans are put off until a later date. They did do an eeg. Gary drove in Fri. (2 hr. drive on a good day) and will spend the nite. Three of LA's friends, also, made the drive in on Fri. What a relief to a G'ma so far away. I should have gotten a ride up with the Hawkeyes ! They will be having a shoot out with the Gophers, at noon, a few blocks from E's hospital. (for Uncle Mike, Team Duals this wk-end at Carver Arena ) I visited, Michael's up-date, to read about 'Walt's World'. Sounds like a great trip, but now health problems. My prayers for All...G'ma Clayton To G'ma Clayton...So sorry Gophers 75.. Iowa 70. Watching the game as I update Emma's and Michael's page. (Michael's grandpa) January 17, 1999 Saturday, late, don't know the date. Thanks mom for getting out the updates. I think I needed to write so I could process a little of this myself. It may also fill in some of the missing pieces so don't think you are off the hook yet! When we first started chemo in September, we knew that 7 to 10 days into the cycle her body would not have the ability to fight off infection. We also knew that serious infection could lead to a condition known as septic shock. This is what happened to Emma beginning on Wednesday. A fungal infection(candida)caused the high temperatures and made her more susceptible to seizures. It also led to a weakening of the blood vessels making the delivery of oxygen to her organs less efficient and permitting fluid to build up in her lungs. That is the edema we see around her heart on the chest xrays. As a result, she is in acute respiratory distress and her breathing is now being performed by a machine called a ventilator. It is the most painful event we have experienced so far. I think it is more painful knowing we were so close to making it through the protocol without major consequence. Emma has been paralyzed with medication so she does not fight the machine. We have been warned that it is a slow process to correct the situation but all signs right now are positive and there is no reason she cannot recover. The spinal tap reveals no signs of menengitis and none of the blood cultures taken after the line was removed have come back positive for yeast. Her temperatures are normal and with appropriate medication her blood pressures are very good. I am confident and greatful that she is receiving the best care human beings can provide. The rest is up to her and God. I know she is strong and fighting and I pray that it is God's plan she will be dragging me down the halls of 5B very soon! Thanks for all the prayers and support during this difficult time. January 20, 1999 Dear Ones….We are getting the most beautiful snow. I'm so glad the car is in the parking garage and G'ma is parked in the 5-B family lounge. LeeAnn spent last nite at R. McD. House, and she looked quite rested this AM. I also had a good nite and Emma did too.. LeeAnn has me doing this note on her lap top while she goes to mail letters and have film sent away. This goes on a disc and tonite, when we visit the computer site, we can put in the little disc and all will receive a note from the hospital. Emma is still fighting the infection. She will probably stay on the ventilator until the inflammation clears. This could take several days. CT scans last night and the night before show no signs that the fungus has colonized. The yeast has been identified as Candida parapsilosis. It is one that is unusual, but definitely treatable. The antibiotic is called amphotericen. It is known around this unit as amphoterrible due to the harmful effect is can have on the kidneys. One of the more difficult aspects of treating this infection is the fact her central line and even the temporary lines will seed and cannot be cleared with medication. For this reason (and two positive cultures), the temporary and arterial line had to be removed and three peripheral iv's were placed in her scalp. This was done last night under the careful hands of Dr. Sweeney. What a comfort to mom. We expect another week to pass before she is off the vent. Will keep you posted. M.E. and L.A. January 28, 1999 A lot to report since the last update. While the emotions are impossible to quantify, we can give you some indication of the reality we have processed by measuring some of the more routine procedures. As you know from the previous update, the yeast in her blood has the unfortunate tendency to seed on her central line so that had to be pulled and replaced with a temporary line. To draw blood, an arterial line was placed in her wrist. Both of these lines had to be removed when the blood cultures returned positive for yeast. To prevent a continuation of this catch 22 (need the lines for meds and blood draws, as long as there are lines, we are going to need meds and blood draws), we began the peripheral iv process. The problem with peripheral iv’s is that they do not last very long. Their life is even shorter when you put through certain kinds of medications that can be toxic to the skin or hard on the veins. For instance, platelets are not typically given through a peripheral iv. She has been receiving platelets up to 3 or 4 times per day. Despite remarkably strong veins, she has gone through at least 17 and possibly 20+ peripheral ivs. (Quite frankly, I lost count!) In addition she has had blood drawn from arms, ankles, or wrists at least twice a day and usually more often. Meanwhile, back at the iv pole… When we started two weeks ago, the pole (and bed) held 11 auto syringes and a dual baxter pump. Over the two weeks she has gotten medicine that sedates, propofol, chloralhydrate, morphine, versed), paralyzes, (cisatracurium) increases blood pressure (dopamine, dobutamine, calcium chloride, fenoldopan), and antibiotics, (anphotericin b, ancef, ceftazidine, fluconazole, vancomycin, and bactrim). This is not a comprehensive list. I refused to learn any more!!! Now she is down to three auto syringes and a dual baxter! Her blood pressure is stable and she is doing remarkably well. Her white count when this started was less than 100, today it is a normal, healthy 8000+. Her platelets were 5000 and now a reasonably healthy 48,000. This means she can now fend off infections and should not be at risk for excessive bleeding. For nutrition, she continues to receive TPN, lipids and now (again) tube feeds (vivonex) which are up to 19ml/hr and climbing. (Goal: 50/hr). As for the yeast, we are now day 5 with no positive culture. After 7 days they will consider replacing the line and we will hopefully be done with peripheral ivs. She did show a positive culture for staph infection on the 21st, but no more sign of that (hopefully, it was only due to a contamination of the sample!!). Overall, the progress has been slow, but steady. Progress after sepsis and acute respiratory distress takes place at glacial speeds. Last Sunday marked a dramatic point. Her vitals were great and she was tolerating reduced settings on the vent. Unfortunately, she developed a hole in her lung which led to a pneumothorax (air in the chest) causing displacement of the lung. Fortunately it resolved without collapse of the lung or a chest tube. Thanks Dr. Sweeney. "Just a little of that 100% oxygen for a short while is a neat trick" Today it is much smaller and expected to resolve on its own as the hole appears to have healed. As for the ventilator, it sounds likely that the tube will be removed tomorrow. Gasp. Guess that's why I'm updating now. Can't sleep and can't wait, better doing something productive. Emma is breathing on her own without the need for the vent and her blood gases remain well within the healthy ranges, so it appears a safe time to let her start doing it alone. Fingers crossed! It has been a long two weeks. Family and friends have lightened the load considerably. Every day we are grateful for Emma’s considerable strength and we will be looking into her eyes with a whole new perspective. God Bless. LeeAnn January 31, 1999 Emma is off the ventilator!!!!!! As of 9:00 a.m. this morning, she started breathing on her own. We are thrilled. She is one tough cookie! They felt she needed an extra couple of days, so postphoned the Friday plan. The first 24 hours are critical, but she seems very strong and is certainly happy to be moving her head and closing her mouth. Sounds like we will stay on 4E for a few days then up to 5B for a week or so. She will most likely be coming home on anphotericin for a few weeks. This week they will probably place a pic line in her arm for meds and blood draws (yea! Yeast seems under control as we are day 8 with no positive cultures in her blood.) She is also having some withdrawal symptoms from the morphine. To be expected, but disconcerting, nonetheless! As always, thanks for the prayers and support. LeeAnn February 07, 1999 Sunday a.m. We made it up to 5B last Tuesday afternoon. Mom arrived Wednesday afternoon and we enjoyed a week of steady forward progress. Emma is doing great and while still using a bit of oxygen to keep her blood saturation levels up, she is well on the mend. No further sign of yeast in the blood and no new problems. Monday she will get a new central line followed by her MRI. We anxiously await the report. I expect we will get some walking papers toward the end of the week. Unfortunately, I must add a bit more drama to the events of the past month. Friday evening, while mom was staying with Emma, I escaped to Ronald McDonald house for a break. The break I got was more than I asked for! On the return trip I did just that! Fell over my own two feet and fractured my left tibia near the knee. No great story to tell, just a freak accident that leaves me either on crutches or cruising in a borrowed wheelchair here at the hospital. When it rains, it pours! I have a clinic appointment on Tuesday. Will find out then if I need a cast or can get by on the knee immobilizer they gave me in the ER. Emma seems to know and has been exceptionally patient. Thanks for being here, mom! What would we do without you? Despite this, we are exceptionally greatful for her recovery and continue to keep things in perspective. Thanks again to all of you who are keeping us in your prayers! With Love and Thanks. LeeAnn |
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