Home About About the Event Kristen's Gift About Kristen's Gift Journal Contact Contact CHaD John Xiggoros' Journal of Kristen Xiggoros Mid November 1994. Kristen had a rash of small brown spots on her neck. Prior to this time she was a healthy wonderful, still is, child. Kristen was taken to Dr. Fitzgerald who ordered blood work for possible bleeding under the skin. Kristen also complained of lethargy. Dr. Fitzgerald also felt that Kristen's spleen might be a little large. Blood work came back with low counts in red, white, and platelets, no diagnosis or medication was prescribed. Dr. Fitzgerald referred Kristen to NH Hematology Oncology. Dr. Breschetti saw Kristen in December and ordered a series of bloodtests. The spleen was still enlarged and slight fevers started to appear. Kristen went for five to six weeks for blood work. The fevers were still present and the spleen was enlarged. Dr. Breschetti felt the problem was as yet an unnamed virus and that the spleen was somehow eating the healthy blood prematurely. All tests, including a chest x-ray were negative. Dr. Breschetti referred Kristen to pediatric oncology/hematology at Mary Hitchcock on Dec 12th. Met with Dr. Larson who ordered more blood tests and reiterated Dr. Breschetti assertion that the problem was viral in nature, the spleen was still enlarged, rash on the neck, lethargy, and low-grade short-term fevers. CHAD performed a CAT scan and ultra sound, which turned out negative. CHAD performed a bone morrow that on Dec 12th was also negative. More esoteric types of blood tests were ordered and Kristen's condition was the same, with the spleen slightly larger. Dr. Breschetti kept performing tests and counts that were reported to CHAD weekly. Cancers were discussed after the bone marrow and we were told no cancer existed and that the condition of the spleen was viral in nature. At the end of April Dr. Larson felt the spleen was enlarged to the point of needing removal. He noted that he had no diagnosis to base the splenectomy on other than the aberrant size of the spleen and the low blood counts. We agreed that this was a course of action we felt was in Kristen's best interest. On May16th Dr. Mooney of CHAD removed Kristen's spleen, which was very large. He told us in post op he noticed discoloration on the liver and had biopsied that organ. Kristen had a rough couple of days in recovery but came through it like a real pro. On May 18th Dr. Larson asked to see Patty and I. He stated that cell lymphoma was found in Kristen's spleen and liver and that she had cancer. Our world crashed into dust. He felt that her hepta-splematic condition was extremely rare in a 13 year old and that because of this rarity a couple of weeks of consult would be needed to develop a protocol we asked if delays would hurt Kristen and was told no. Kristen stayed in the CHAD Unit for six days and was released on May 22nd. Kristen recovered at home and during the following weeks received blood work, ultra sound, galleon scan, and exams at CHAD. On June 16th the protocol was discussed with us and started at CHAD. It is to consist of a year of traditional chemotherapy's to include vincristine, adriamycine, prednasone, zofran, and several antibiotics. It should be noted here that prior to the splenectamy and the protocol no medication was ever prescribed for Kristen other than folic acid. The initial protocol was weekly with three spinal taps performed individually by Doctors Chaffee, Larson, and Boil. The first two LH's were extremely painful with headaches and back pain. It is July 27th and the initial weekly Chemo is over. Kristen has lost her hair but is so very beautiful still. She has some minor fever spikes, one visit to the Elliot, and some slight discomfort but nothing like the heavy Friday Chemo's with the LH's. On July 25th we visited with our second opinion specialist Dr. Osband who examined Kristen at Mass General. He suggested we write this somewhat disjointed journal. He felt the therapy from CHAD was sound and that based on the diagnosis he was comfortable. However her condition was so rare and specific that he requested her records and wanted the pathology checked by specialists of the Army in DC. The necessary releases were Okayed and set in motion to verify CHAD original diagnosis. Kristen next appointment at CHAD is August 4th for CAT scan and chemo. The actual measurement of the protocols success is still not definite in my mind or in the mind of the CHAD doctors. The CAT scan at CHAD was done on the 4th and the results appear to be good. We were told that the liver had reduced in size and that the spotting was fading. Kristen went for a subsequent treatment in late August and received the push, the drip, and the oral. Sept 7, 1995. First day of school went well. The nurse and several staff and friends who know of Kristen's cosmetic needs are supportive and helpful. Kristen has had a good Sept and most of Oct. She had some tennis lessons and a fun time in Canada. On 10/20 she had dizzy spells and a fever. She also had slight disorientation. DHMC was called and Dr. Boyle suggested Tylenol and fluids. She had a chemo and LP scheduled for Monday the 22nd. The tests on the22nd showed low red counts. Chemo was given and Dr. Larson who seems to have the magic touch in this area performed LP. Kristen was hot and disorientated at home but thank God for Patty who calmed her down and got her on pretty solid footing. An appt was made for a 2-unit blood transfusion on Tues the 23rd.Kristen and the family have a school help meeting on the 23rd, which seems like a good thing. The most frustrating thing is Kristen having cancer and not being able to do 100% of the things she loves. Her old friends seem to have abandoned her but she has made new friends that on that basis alone must be a lot nicer people than her old circle. The second most frustrating and emotionally draining aspect of all this is the lack of input from the doctors as to how Kristen's medical condition actually is. When you try to pin down answers the responses are vague. This, because of a parents love for their child, is the ultimate psychological torture. I am going to press for more concrete info and what type of tests are being used or considered to track her case. Nov 9th up to this point I have tried to contact Dr. Osband at least 10 times to get the info he promised us in our Mass General meeting. He has been unavailable and has not returned calls. I don't know if I should report his behavior to the Medical Board or write him a nasty registered letter. Kristen's medical needs cause enough concern without this type of horrendous behavior on the part of Osband. Any parent would want their child to have a second opinion, especially with this rare lymphoma. On Monday I plan on calling the Jimmy Fund or Sloan-Kittering to see if they can help. I want help. I want to note two things one; I hope Healthsource hasn't paid Osband and two the ACS has not been much help. Kristen had a CAT scan, blood work, and echocardiogram at DHMC. As usual the people were great, especially the technicians. Friday she will have a liver biopsy to see her progress. The doctor is Susan Edwards. The lack of prognosis is nerve racking but Kris looks great and has been doing well. Spoke with Dr. Larson on Tues, Nov 13 at about 6pm. I had called to check on a diagnosis of HGL. Kristen was doing well after the tests but had a severe neck pain on her left side. Dr. Larson did not have great news and again my heart and soul were tormented beyond any imagination. Kristen liver was smaller but still showed lymphoma. I also learnt for the first time that the lymphoma in the bone marrow was still present. This was a real shock since I had felt and believed that the cancer was never present in that region. The first 2 bone marrows were negative, but the marrow after the splenectomy was tainted. Dr.Larson said that the chemo for 11/17 was being canceled and that he was going to try and gather resources to re-determine a protocol. Some comments were higher dosages or visits elsewhere. I still have confidence in CHAD but I am certainly whacked by this weak news and lack of an immediate response to Kristen's condition. I also asked Larson to see if he could contact Osband. Osband remains unreachable. I'm really angry with him because of his lack of feelings for Kristen and my family. I really want to report his behavior to someone, perhaps the AMA. I also made some contacts with Boston Children's Hospital and if Larson can't contact Osband I'm going to institute a new second opinion search this Monday. Being more specific on the test results. Larson stated the results were not as good as we expected. I expected to see it gone, although it has not spread. It is acting more like an adult than a pediatric lymphoma. I did not realize that a complete eradication was expected during the first third of the chemotherapy. I have never felt so empty, alone, and helpless. I need to maintain control for Kristen's sake and my sake. Patty as always is a saint and a comfort although I detect her nerves are getting frazzled. I spoke with Osband and the need was confirmed that K needed more intense treatment. On Friday the 22nd of November K went in for four days of ICE treatment. She will receive long doses of chemo followed by lots of IV so as not to burn the bladder and kidneys. Thank God again for Patty. She is wonderful and I hope she can pace herself. K has to watch the white blood cells as heavy doses cause a great decrease in count and infections can occur. She also had 2 pts of blood transfused on Sunday night. K is so brave and beautiful. I love her and don't want to even think about losing her. She is a fighter and I know she will win. I also think its time to bring in a tutor as school time may be in jeopardy. Sunday December 4th. On Saturday we reported to Dr. Boyle a temp of 101. We were advised to give Tylenol and call in am. On Sunday Kristen's temp was 101 in the am and 102 at noon. She felt and looked great but due to the ICE chemo's affect on the white blood cells Dr. Boyle wanted her at CHAD for observation and test. At the hospital Boyle stated that had he seen Friday's Elliot Hospitals blood tests results on Sat he would have brought her up then since the white counts were low. (This may have been a screw-up and to this point no medical doctor involved with Kris has answered my questions about the major possible side effects such as S, G, H, and v. Nurse Patty is doing a great job with the neupogen injections. She is the greatest mother in the world!) January 9 and 10 Kristen and Patty went to MH for a biopsy of the liver and a bone marrow. The results were excellent. Dr. Larson stated that she was in remission and that the ICE therapy would continue since it seemed to be working. Kristina was not doing so well and her tumor is spreading. I am praying for her every day. Kristen finished her ICE treatment on Monday the 15th and it hit her hard, but thank God it's working. It was the first good news we had in 14 months. The doctors are unsure of the next steps after two more ICE treatments since Kristen's lymphoma is so rare. I spoke with Osband and he and others will work with MH. The week of the biopsy I spoke with Fr. John, a Greek Orthodox priest. He told me to pray to the Saints and Jesus with the Orthodox format. I am learning of the miracles of some modern saints, Saint Nectarous, Saint Ignatius, and Saint John of Kronstasdt. I also spoke with Father Peter and got an icon for Kristen. It is a miracle and strange things like the prayer saying a stranger would bring goodness into your life and Fr. Peter being a strong source of Saint Nectarous preaching was more than a coincidence, it was the hand of God! I am going to pray for Kristen's salvation and mine and hope the Holy Spirit guides me to a stronger religious belief. Some people also told me an herbal drug named Essiac that is made by a woman in Newburyport Mass. I will look into it because I believe nature holds many miracles. The next step is to see if the ICE alone is enough or if a bone marrow is the final answer. I pray to the Virgin Mary that the ICE works and Kristen's life is restored to normal. The Ice therapy put Kristen into remission in January. She is scheduled for three more ICE treatments since remission does not mean obliteration of the cancer. She is taking these treatments like a trooper and we continue with daily CFS shots from Patty and thrice-weekly blood drawing. The first week of Feb. her blood counts were low and she went to MHO for transfusions. These scare me but they are necessary. I also continue to pray for her every day. We are planning a trip to Disney on Feb 23rd and I hope physically she remains strong enough to enjoy it. We all can use the break. She is scheduled for an ice treatment on March 1st 1996 and the only puzzling thing is that Larsen is unsure of what the next step is. Larson sounds like a federal general in the Civil War. A bone marrow is still possible. An old friend, attorney Ken Brown who specializes in malpractice and medical law assured me that with strong doctors recommendations, coverage through the HMO would not be a problem. March 19, 1996 at about 8pm. T has called to let us know Christina had died. There's no pretty way to say it but I pray for her soul and I pray for Kristen's complete recovery. Kristen is slated for a treatment this Friday and I know we'll have to use every resource to make sure the right decisions are made. The final decision belongs to God but I'm going to do everything in my power to help her get back to life on a 100% basis. I pray again for Christina's soul and know her earthly suffering is over. Kristen and I spent the day at Hanover for tests. She's doing great in school and socially. She is scheduled to have a bone marrow, blood work, and CAT scan. Patty, Kristen, and I went to MH for her treatment and an update on her condition. We met with only Dr. Larsen who covered several points. Kx is still in a remission and this is a positive sign. Larsen did caution that medical research cannot detect all cancers and that the stop now option was not a viable one. He spoke of how he and doctor Chaffee have agonized over Kristen's case since there is no prior case history. He reiterated that even at a recent pedi onc meeting in Florida no other physicians had encountered hepta splematic t-cell in an adolescent female. It was odd because this meeting was the first time he explained this diagnosis is normally found in adult males. Besides the input form Larsens sources a new Doctor, Wienstein, from Mass general is also reviewing Kx's case. Hopefully he will work with Osband on this. The second option presented was a 2-6 month protocol similar to the ICE but without the C. The C is the bone marrow banger and could have the most detrimental long term effects. This is the option we are following. The fearful bone marrow was also presented as the third option which MH felt was not necessary at this time but may be brought forward after the 2rd after the 2-6 months of IE treatments which are still a three day process. We also discussed all with KX and spoke about the need for exercise and diet restraint. The marrow discussed was auto; meaning Kristen's marrow would be used rather than an outside donor. The outside donor option would be used in case of a failure on the first self-generated marrow. Patty is quiet and strong as usual but I continue to anguish over this ordeal. The specter is always they're hovering, especially with the loss of C and BI. I continue to pray and have faith. KX continues to be strong willed and positive and for this I love and respect her even more. Based on input from MH and the Jimmy Fund; Dana-Farber, it was decided a bone marrow would give Kristen her best chance for complete success. The bone marrow is to be in July 1996 at Children 6 west. The lead doctor is dr. Lehman and Dr.Guinan. The marrow is to be autologus and from a blood pharisis which is at-cell harvest from Kristen's own blood. A donor was not found but since she is in remission a self transplant is possible. The pharisis was three four hour sits on a Rube Goldberg device. Also Childrens has taken her vital parameters through a series of hearing, vision, dental, and heart tests. The marrow begins on six west in an isolation room. Two room are served by one nurses station. Patty and I are staying at Ronald McDonalds house in Brookline Mass, a 10 minute walk from the hospital. In the unit the nurses are exceptional. It is a long four week haul. K suffers from nausea and listlessness but does fantastic. Patty is great. Initially they load her up with chemo in a non-clean environment. The day after the chemo ends is day one, the introduction of the marrow. It takes K about 14 days to engraft. The whole process is long and boring. She does a great job and finally gets to break out of her room. The clean room was a pain in the neck. K's side effects were lack of appetite, sore throat, shivers from some of the medication, and general achiness. She is marvelous. Post marrow goes pretty smooth. She is home in a semi-quarantine status with restrictions to open air places. I wish she was more physically motivated but I'm not going through the process she is. The school has arranged for a tutor since she can't be in closed areas with people at this time due to her suppressed immune system. She looks and feels great. Nov. 11th she pulls a sneaky with friends. She also has a low grade fever and a bloody nose. Our Nov. 14th visit to MH with Chaffee turns into a nightmare. Her platelets are down to 12k from 200k. They give a platelet iv and schedule a bone marrow for Monday. Something bad is happening and I pray to God and St. Nectarias that she is cured. I am really running out of the energy to survive this. I know the real pressure is on K and I love her strength so much. She is a wonderful person who can accomplish anything. I am the weak one so I fret. Our worst fears are confirmed, K has relapsed and the cancer is back. MH is at a loss but the autologous transplant must have contained cancerous cells, or the chemo missed killing it all. K is told and her spirit and determination is not diminished, although inside she must feel the pain and uncertainty. It is a shame that a young girl, so beautiful and full of life, is battling both cancer and the effects of her body changing. This loss of innocence through her medical trials is surely her most painful experience. MH researches the next step and since the transplant has weakened her body regular chemo is ruled out. Duke is working, with Glaxon Chemical on an experimental drug, 0506, that is a post marrow cancer inhibitor through selective DNA engineering. The first week of December, 1996, we travel to Duke to begin the clinical trial. We have a horrible trip down in horrendous weather conditions, but P, K and I still manage to have a good time. We stop overnight in time for the biggest homebody party of the year. At Duke the people are nice, but slow. The506 is not crushing like chemo and things go slow and smooth. K is pretty lively and we go out to eat, hit the malls and movies, and stroll the campus. The Duke stay ends and MH is successful in getting 506 sent to N.H. The 506 seems to help but is not bringing the blood up enough. She takes the506 at MH through Jan with an occasional transfusion for energy. She is also on heavy prednasone, a dangerous steroid, that works to keep her whites up. The drug swells her beautiful face and is torture to her soul. It also is debilitating to the bones but with any attempt to wean her off it, the blood drops quickly. She lives in a frame that is not her but she does not complain. In Feb 1997 the 506 is failing. MH feels an oral long dose of VP 16, a chemo, may work smarter than the weekly push. We are told it's a long shot but K wants to try. The oral chemo starts and we plan a trip to Aruba. K wants to be warm and play in the Ocean. We go to the Aruba Raddison the first week of March with the chemo, a ton of pills, and happy hearts. Jason stays in school and I love him for his strength. We have a great week. The island is beautiful and T, P and I spend glorious days by the pool and beach. We check out all the hotels on Palm Beach, shop downtown, tube ride, eat like pigs and even play poolside Bingo. K looks beautiful in her tan and soft curly hair. While P and I gamble one afternoon a local even tries to pick her up. Nothing in the past months bolstered her spirits and ego like that brief interlude. She felt like the beautiful, intelligent woman that had been battling with operations, steroids, chemo, had broken through the host of horrors and that she was desirable as a person. Aruba saw her in great health, with only one sour stomach episode where a Harvard med T let me con a pharmacist into some prescriptions. We had a great day on a private island and K loved the lizards and birds. She was divine and my love for her and P was immense. If God gave us a glimpse of heaven through our trials this was it. Lionel D brought us home to the reality of the fight. The VP-16 was barely controlling the cancer and more transfusion were needed. We also sought to fortify her system through homeopathy and put K on a regimen of pills and powders, although the strict tenants of the diet she found hard to swallow. She continued with her tutor and studied hard. The weekly trips to MH continued and we prayed for some medical miracle. The vp-16 was beginning to get overrun by the cancer and in early June the decision to try pentastatin, another chemo, was proposed. The emotional rollercoaster of maybe...maybe...no...would have crushed most adults, never mind a fifteen year old child. K continued with a bold spirit and a strong will. She also planned, with Uncle Greg and P, a huge clambake for the MH staff and our supportive neighbors. Sunday June 8th we had a great time. K again was beautiful and full of energy. She made special prizes for every child and ran raffles making sure everyone kid won. She was a gracious hostess and loved waiting on those that waited on her. In July Kim had her baby and K held him the second day of her birth. Her face shows so much love, all the while knowing this type of joy, and maybe even life itself would be denied to her. The transfusions continued and the pentastatin was failing. No exploratory tests were ordered and I feel the MH doctors felt the hopelessness creeping in. I guess they felt further discomfort would only make a bad situation worse. We still enjoyed each other and went out although her interaction with her friends decreased. Lisa spent a good weekend with her at our condo in Ogunquit and I think that was her last face to face with any other friends. Maybe seeing them hurt to much, too much of a testament to what her disease was denying her. At this point the love and will of P became the cornerstone of K's life. In Sept a famous homeopath from Greece prescribed hemlock as a cure, but this too failed. In Sept we were told by MH that there were no protocols left and that K was terminal. P made a decision not to tell her, feeling it would deplete any will left. The decision was the right one. Transfusions now increased to twice a week, but K still fought. She loved her tutor Maggie and enjoyed shopping with P. In Oct the NIC recommended heavy doses of accutane, a vitamin A drug. Sloan Kettering also felt this might help. K started on this protocol but was getting weak. In early October her feet swelled and her energy level dropped. Still K fought and p became more powerful, urging K on. It was sad and beautiful at the same time. Kim was back and K liked that. K's liver swelled but not much. Climbing stairs was painful and as she and Make a Wish designed a new room, Karins Climb donated a stair climber. K walked slower now, her legs and feet horribly swollen. But still she studied, watched Rosey and sat for her showers. P the great provider and protector. The room was great and she was also a Halloween host at the house. On Tuesday Nov 4th she fell and strained her neck. My mother was helping out and P was working a Dickens schedule for work and K. now talked slower and lower. Her drive to study was gone and her appetite was low. p spoon fed her. On Friday the 7th I helped her in the car for her transfusion trip and on the ride up she was sleepy, weak, and tired. Still she didn't complain and helped me get her in the wheelchair at MH. The transfusions of platelet's started, but Sarah told me her liver functions were weak. This was at noon. I went to get a sandwich and Anne sat with her. I offered K something to eat but she shook her head no. At five I couldn't get her out of the bed, and neither could T and Kim. We went on a fun ride, in her bed, to CHAD. I cracked some jokes and she smiled. At CHAD Sarah said she was weakening and I called P. Linda flew her up. K was on pain medication, but comfortable. I worked Sat till three then headed north. K was dreamlike, but her eyes would open and P and I would talk to her. At Sam Sunday K was apparently uncomfortable and the Dilaud was increased. The angels left flowers for her and I showed her pictures of China. P and I constantly told her we loved her. At 10:30 her eyes would open wide and her beautiful lips started to tremble. Since July her nose and then her teeth had bled horribly as her platelets dropped. I feared this would happen now, but God spared us this last horror. At 11:20 Sunday, with P and I standing over her, she left us in the company of angels. Sarah was there and her nurses, Anne, Pam, and the social worker came in to bid her good-bye. No words can describe my pain, my loss, and my love. Dave and Linda were there for K, P and I and that was a blessing. The details of her funeral and the days after do not work to celebrate the greatness of K's life. The best testament was a Cathedral packed with her friends, and people who loved her and us. All can be stronger and more thankful for life, and heaven, from the courage and spirit shown by our beautiful daughter Kristen Elizabeth Xiggoros. Perhaps someday I will have the will to fine tune and detail this journal. Now I focus on P and J and the steps needed to live a good life with the knowledge that an angel named Kristen (or Mushkie) will greet all of us with a smile, a beautiful face framed by long flowing hair, and a mischievous laugh.
Mid November 1994. Kristen had a rash of small brown spots on her neck. Prior to this time she was a healthy wonderful, still is, child. Kristen was taken to Dr. Fitzgerald who ordered blood work for possible bleeding under the skin. Kristen also complained of lethargy. Dr. Fitzgerald also felt that Kristen's spleen might be a little large.
Blood work came back with low counts in red, white, and platelets, no diagnosis or medication was prescribed. Dr. Fitzgerald referred Kristen to NH Hematology Oncology. Dr. Breschetti saw Kristen in December and ordered a series of bloodtests. The spleen was still enlarged and slight fevers started to appear. Kristen went for five to six weeks for blood work.
The fevers were still present and the spleen was enlarged. Dr. Breschetti felt the problem was as yet an unnamed virus and that the spleen was somehow eating the healthy blood prematurely. All tests, including a chest x-ray were negative. Dr. Breschetti referred Kristen to pediatric oncology/hematology at Mary Hitchcock on Dec 12th.
Met with Dr. Larson who ordered more blood tests and reiterated Dr. Breschetti assertion that the problem was viral in nature, the spleen was still enlarged, rash on the neck, lethargy, and low-grade short-term fevers. CHAD performed a CAT scan and ultra sound, which turned out negative.
CHAD performed a bone morrow that on Dec 12th was also negative. More esoteric types of blood tests were ordered and Kristen's condition was the same, with the spleen slightly larger. Dr. Breschetti kept performing tests and counts that were reported to CHAD weekly. Cancers were discussed after the bone marrow and we were told no cancer existed and that the condition of the spleen was viral in nature.
At the end of April Dr. Larson felt the spleen was enlarged to the point of needing removal. He noted that he had no diagnosis to base the splenectomy on other than the aberrant size of the spleen and the low blood counts. We agreed that this was a course of action we felt was in Kristen's best interest. On May16th Dr. Mooney of CHAD removed Kristen's spleen, which was very large. He told us in post op he noticed discoloration on the liver and had biopsied that organ. Kristen had a rough couple of days in recovery but came through it like a real pro.
On May 18th Dr. Larson asked to see Patty and I. He stated that cell lymphoma was found in Kristen's spleen and liver and that she had cancer. Our world crashed into dust. He felt that her hepta-splematic condition was extremely rare in a 13 year old and that because of this rarity a couple of weeks of consult would be needed to develop a protocol we asked if delays would hurt Kristen and was told no. Kristen stayed in the CHAD Unit for six days and was released on May 22nd.
Kristen recovered at home and during the following weeks received blood work, ultra sound, galleon scan, and exams at CHAD. On June 16th the protocol was discussed with us and started at CHAD. It is to consist of a year of traditional chemotherapy's to include vincristine, adriamycine, prednasone, zofran, and several antibiotics. It should be noted here that prior to the splenectamy and the protocol no medication was ever prescribed for Kristen other than folic acid.
The initial protocol was weekly with three spinal taps performed individually by Doctors Chaffee, Larson, and Boil. The first two LH's were extremely painful with headaches and back pain. It is July 27th and the initial weekly Chemo is over. Kristen has lost her hair but is so very beautiful still. She has some minor fever spikes, one visit to the Elliot, and some slight discomfort but nothing like the heavy Friday Chemo's with the LH's.
On July 25th we visited with our second opinion specialist Dr. Osband who examined Kristen at Mass General. He suggested we write this somewhat disjointed journal. He felt the therapy from CHAD was sound and that based on the diagnosis he was comfortable. However her condition was so rare and specific that he requested her records and wanted the pathology checked by specialists of the Army in DC. The necessary releases were Okayed and set in motion to verify CHAD original diagnosis.
Kristen next appointment at CHAD is August 4th for CAT scan and chemo. The actual measurement of the protocols success is still not definite in my mind or in the mind of the CHAD doctors.
The CAT scan at CHAD was done on the 4th and the results appear to be good. We were told that the liver had reduced in size and that the spotting was fading. Kristen went for a subsequent treatment in late August and received the push, the drip, and the oral.
Sept 7, 1995. First day of school went well. The nurse and several staff and friends who know of Kristen's cosmetic needs are supportive and helpful. Kristen has had a good Sept and most of Oct. She had some tennis lessons and a fun time in Canada. On 10/20 she had dizzy spells and a fever. She also had slight disorientation. DHMC was called and Dr. Boyle suggested Tylenol and fluids. She had a chemo and LP scheduled for Monday the 22nd. The tests on the22nd showed low red counts. Chemo was given and Dr. Larson who seems to have the magic touch in this area performed LP. Kristen was hot and disorientated at home but thank God for Patty who calmed her down and got her on pretty solid footing. An appt was made for a 2-unit blood transfusion on Tues the 23rd.Kristen and the family have a school help meeting on the 23rd, which seems like a good thing. The most frustrating thing is Kristen having cancer and not being able to do 100% of the things she loves. Her old friends seem to have abandoned her but she has made new friends that on that basis alone must be a lot nicer people than her old circle.
The second most frustrating and emotionally draining aspect of all this is the lack of input from the doctors as to how Kristen's medical condition actually is. When you try to pin down answers the responses are vague. This, because of a parents love for their child, is the ultimate psychological torture. I am going to press for more concrete info and what type of tests are being used or considered to track her case. Nov 9th up to this point I have tried to contact Dr. Osband at least 10 times to get the info he promised us in our Mass General meeting. He has been unavailable and has not returned calls. I don't know if I should report his behavior to the Medical Board or write him a nasty registered letter. Kristen's medical needs cause enough concern without this type of horrendous behavior on the part of Osband. Any parent would want their child to have a second opinion, especially with this rare lymphoma. On Monday I plan on calling the Jimmy Fund or Sloan-Kittering to see if they can help. I want help. I want to note two things one; I hope Healthsource hasn't paid Osband and two the ACS has not been much help.
Kristen had a CAT scan, blood work, and echocardiogram at DHMC. As usual the people were great, especially the technicians. Friday she will have a liver biopsy to see her progress. The doctor is Susan Edwards. The lack of prognosis is nerve racking but Kris looks great and has been doing well.
Spoke with Dr. Larson on Tues, Nov 13 at about 6pm. I had called to check on a diagnosis of HGL. Kristen was doing well after the tests but had a severe neck pain on her left side. Dr. Larson did not have great news and again my heart and soul were tormented beyond any imagination. Kristen liver was smaller but still showed lymphoma. I also learnt for the first time that the lymphoma in the bone marrow was still present. This was a real shock since I had felt and believed that the cancer was never present in that region. The first 2 bone marrows were negative, but the marrow after the splenectomy was tainted.
Dr.Larson said that the chemo for 11/17 was being canceled and that he was going to try and gather resources to re-determine a protocol. Some comments were higher dosages or visits elsewhere. I still have confidence in CHAD but I am certainly whacked by this weak news and lack of an immediate response to Kristen's condition. I also asked Larson to see if he could contact Osband. Osband remains unreachable. I'm really angry with him because of his lack of feelings for Kristen and my family. I really want to report his behavior to someone, perhaps the AMA. I also made some contacts with Boston Children's Hospital and if Larson can't contact Osband I'm going to institute a new second opinion search this Monday.
Being more specific on the test results. Larson stated the results were not as good as we expected. I expected to see it gone, although it has not spread. It is acting more like an adult than a pediatric lymphoma. I did not realize that a complete eradication was expected during the first third of the chemotherapy. I have never felt so empty, alone, and helpless. I need to maintain control for Kristen's sake and my sake. Patty as always is a saint and a comfort although I detect her nerves are getting frazzled.
I spoke with Osband and the need was confirmed that K needed more intense treatment. On Friday the 22nd of November K went in for four days of ICE treatment. She will receive long doses of chemo followed by lots of IV so as not to burn the bladder and kidneys. Thank God again for Patty. She is wonderful and I hope she can pace herself. K has to watch the white blood cells as heavy doses cause a great decrease in count and infections can occur. She also had 2 pts of blood transfused on Sunday night. K is so brave and beautiful. I love her and don't want to even think about losing her. She is a fighter and I know she will win. I also think its time to bring in a tutor as school time may be in jeopardy.
Sunday December 4th. On Saturday we reported to Dr. Boyle a temp of 101. We were advised to give Tylenol and call in am. On Sunday Kristen's temp was 101 in the am and 102 at noon. She felt and looked great but due to the ICE chemo's affect on the white blood cells Dr. Boyle wanted her at CHAD for observation and test. At the hospital Boyle stated that had he seen Friday's Elliot Hospitals blood tests results on Sat he would have brought her up then since the white counts were low. (This may have been a screw-up and to this point no medical doctor involved with Kris has answered my questions about the major possible side effects such as S, G, H, and v. Nurse Patty is doing a great job with the neupogen injections. She is the greatest mother in the world!)
January 9 and 10 Kristen and Patty went to MH for a biopsy of the liver and a bone marrow. The results were excellent. Dr. Larson stated that she was in remission and that the ICE therapy would continue since it seemed to be working. Kristina was not doing so well and her tumor is spreading. I am praying for her every day. Kristen finished her ICE treatment on Monday the 15th and it hit her hard, but thank God it's working. It was the first good news we had in 14 months. The doctors are unsure of the next steps after two more ICE treatments since Kristen's lymphoma is so rare. I spoke with Osband and he and others will work with MH.
The week of the biopsy I spoke with Fr. John, a Greek Orthodox priest. He told me to pray to the Saints and Jesus with the Orthodox format. I am learning of the miracles of some modern saints, Saint Nectarous, Saint Ignatius, and Saint John of Kronstasdt. I also spoke with Father Peter and got an icon for Kristen. It is a miracle and strange things like the prayer saying a stranger would bring goodness into your life and Fr. Peter being a strong source of Saint Nectarous preaching was more than a coincidence, it was the hand of God! I am going to pray for Kristen's salvation and mine and hope the Holy Spirit guides me to a stronger religious belief.
Some people also told me an herbal drug named Essiac that is made by a woman in Newburyport Mass. I will look into it because I believe nature holds many miracles. The next step is to see if the ICE alone is enough or if a bone marrow is the final answer. I pray to the Virgin Mary that the ICE works and Kristen's life is restored to normal.
The Ice therapy put Kristen into remission in January. She is scheduled for three more ICE treatments since remission does not mean obliteration of the cancer. She is taking these treatments like a trooper and we continue with daily CFS shots from Patty and thrice-weekly blood drawing. The first week of Feb. her blood counts were low and she went to MHO for transfusions. These scare me but they are necessary. I also continue to pray for her every day.
We are planning a trip to Disney on Feb 23rd and I hope physically she remains strong enough to enjoy it. We all can use the break. She is scheduled for an ice treatment on March 1st 1996 and the only puzzling thing is that Larsen is unsure of what the next step is. Larson sounds like a federal general in the Civil War. A bone marrow is still possible. An old friend, attorney Ken Brown who specializes in malpractice and medical law assured me that with strong doctors recommendations, coverage through the HMO would not be a problem.
March 19, 1996 at about 8pm. T has called to let us know Christina had died. There's no pretty way to say it but I pray for her soul and I pray for Kristen's complete recovery. Kristen is slated for a treatment this Friday and I know we'll have to use every resource to make sure the right decisions are made. The final decision belongs to God but I'm going to do everything in my power to help her get back to life on a 100% basis. I pray again for Christina's soul and know her earthly suffering is over. Kristen and I spent the day at Hanover for tests. She's doing great in school and socially. She is scheduled to have a bone marrow, blood work, and CAT scan. Patty, Kristen, and I went to MH for her treatment and an update on her condition. We met with only Dr. Larsen who covered several points. Kx is still in a remission and this is a positive sign.
Larsen did caution that medical research cannot detect all cancers and that the stop now option was not a viable one. He spoke of how he and doctor Chaffee have agonized over Kristen's case since there is no prior case history. He reiterated that even at a recent pedi onc meeting in Florida no other physicians had encountered hepta splematic t-cell in an adolescent female. It was odd because this meeting was the first time he explained this diagnosis is normally found in adult males. Besides the input form Larsens sources a new Doctor, Wienstein, from Mass general is also reviewing Kx's case. Hopefully he will work with Osband on this. The second option presented was a 2-6 month protocol similar to the ICE but without the C. The C is the bone marrow banger and could have the most detrimental long term effects. This is the option we are following.
The fearful bone marrow was also presented as the third option which MH felt was not necessary at this time but may be brought forward after the 2rd after the 2-6 months of IE treatments which are still a three day process. We also discussed all with KX and spoke about the need for exercise and diet restraint. The marrow discussed was auto; meaning Kristen's marrow would be used rather than an outside donor. The outside donor option would be used in case of a failure on the first self-generated marrow. Patty is quiet and strong as usual but I continue to anguish over this ordeal. The specter is always they're hovering, especially with the loss of C and BI. I continue to pray and have faith. KX continues to be strong willed and positive and for this I love and respect her even more.
Based on input from MH and the Jimmy Fund; Dana-Farber, it was decided a bone marrow would give Kristen her best chance for complete success. The bone marrow is to be in July 1996 at Children 6 west. The lead doctor is dr. Lehman and Dr.Guinan. The marrow is to be autologus and from a blood pharisis which is at-cell harvest from Kristen's own blood. A donor was not found but since she is in remission a self transplant is possible. The pharisis was three four hour sits on a Rube Goldberg device. Also Childrens has taken her vital parameters through a series of hearing, vision, dental, and heart tests.
The marrow begins on six west in an isolation room. Two room are served by one nurses station. Patty and I are staying at Ronald McDonalds house in Brookline Mass, a 10 minute walk from the hospital. In the unit the nurses are exceptional. It is a long four week haul. K suffers from nausea and listlessness but does fantastic. Patty is great. Initially they load her up with chemo in a non-clean environment. The day after the chemo ends is day one, the introduction of the marrow. It takes K about 14 days to engraft. The whole process is long and boring. She does a great job and finally gets to break out of her room. The clean room was a pain in the neck. K's side effects were lack of appetite, sore throat, shivers from some of the medication, and general achiness. She is marvelous. Post marrow goes pretty smooth. She is home in a semi-quarantine status with restrictions to open air places. I wish she was more physically motivated but I'm not going through the process she is. The school has arranged for a tutor since she can't be in closed areas with people at this time due to her suppressed immune system. She looks and feels great.
Nov. 11th she pulls a sneaky with friends. She also has a low grade fever and a bloody nose. Our Nov. 14th visit to MH with Chaffee turns into a nightmare. Her platelets are down to 12k from 200k. They give a platelet iv and schedule a bone marrow for Monday. Something bad is happening and I pray to God and St. Nectarias that she is cured. I am really running out of the energy to survive this. I know the real pressure is on K and I love her strength so much. She is a wonderful person who can accomplish anything. I am the weak one so I fret.
Our worst fears are confirmed, K has relapsed and the cancer is back. MH is at a loss but the autologous transplant must have contained cancerous cells, or the chemo missed killing it all. K is told and her spirit and determination is not diminished, although inside she must feel the pain and uncertainty. It is a shame that a young girl, so beautiful and full of life, is battling both cancer and the effects of her body changing. This loss of innocence through her medical trials is surely her most painful experience. MH researches the next step and since the transplant has weakened her body regular chemo is ruled out. Duke is working, with Glaxon Chemical on an experimental drug, 0506, that is a post marrow cancer inhibitor through selective DNA engineering.
The first week of December, 1996, we travel to Duke to begin the clinical trial. We have a horrible trip down in horrendous weather conditions, but P, K and I still manage to have a good time. We stop overnight in time for the biggest homebody party of the year. At Duke the people are nice, but slow. The506 is not crushing like chemo and things go slow and smooth. K is pretty lively and we go out to eat, hit the malls and movies, and stroll the campus. The Duke stay ends and MH is successful in getting 506 sent to N.H.
The 506 seems to help but is not bringing the blood up enough. She takes the506 at MH through Jan with an occasional transfusion for energy. She is also on heavy prednasone, a dangerous steroid, that works to keep her whites up. The drug swells her beautiful face and is torture to her soul. It also is debilitating to the bones but with any attempt to wean her off it, the blood drops quickly. She lives in a frame that is not her but she does not complain.
In Feb 1997 the 506 is failing. MH feels an oral long dose of VP 16, a chemo, may work smarter than the weekly push. We are told it's a long shot but K wants to try. The oral chemo starts and we plan a trip to Aruba. K wants to be warm and play in the Ocean. We go to the Aruba Raddison the first week of March with the chemo, a ton of pills, and happy hearts. Jason stays in school and I love him for his strength.
We have a great week. The island is beautiful and T, P and I spend glorious days by the pool and beach. We check out all the hotels on Palm Beach, shop downtown, tube ride, eat like pigs and even play poolside Bingo. K looks beautiful in her tan and soft curly hair. While P and I gamble one afternoon a local even tries to pick her up. Nothing in the past months bolstered her spirits and ego like that brief interlude. She felt like the beautiful, intelligent woman that had been battling with operations, steroids, chemo, had broken through the host of horrors and that she was desirable as a person. Aruba saw her in great health, with only one sour stomach episode where a Harvard med T let me con a pharmacist into some prescriptions. We had a great day on a private island and K loved the lizards and birds. She was divine and my love for her and P was immense. If God gave us a glimpse of heaven through our trials this was it. Lionel D brought us home to the reality of the fight.
The VP-16 was barely controlling the cancer and more transfusion were needed. We also sought to fortify her system through homeopathy and put K on a regimen of pills and powders, although the strict tenants of the diet she found hard to swallow. She continued with her tutor and studied hard. The weekly trips to MH continued and we prayed for some medical miracle. The vp-16 was beginning to get overrun by the cancer and in early June the decision to try pentastatin, another chemo, was proposed. The emotional rollercoaster of maybe...maybe...no...would have crushed most adults, never mind a fifteen year old child. K continued with a bold spirit and a strong will. She also planned, with Uncle Greg and P, a huge clambake for the MH staff and our supportive neighbors. Sunday June 8th we had a great time. K again was beautiful and full of energy. She made special prizes for every child and ran raffles making sure everyone kid won. She was a gracious hostess and loved waiting on those that waited on her.
In July Kim had her baby and K held him the second day of her birth. Her face shows so much love, all the while knowing this type of joy, and maybe even life itself would be denied to her. The transfusions continued and the pentastatin was failing. No exploratory tests were ordered and I feel the MH doctors felt the hopelessness creeping in. I guess they felt further discomfort would only make a bad situation worse. We still enjoyed each other and went out although her interaction with her friends decreased. Lisa spent a good weekend with her at our condo in Ogunquit and I think that was her last face to face with any other friends. Maybe seeing them hurt to much, too much of a testament to what her disease was denying her. At this point the love and will of P became the cornerstone of K's life.
In Sept a famous homeopath from Greece prescribed hemlock as a cure, but this too failed. In Sept we were told by MH that there were no protocols left and that K was terminal. P made a decision not to tell her, feeling it would deplete any will left. The decision was the right one. Transfusions now increased to twice a week, but K still fought. She loved her tutor Maggie and enjoyed shopping with P.
In Oct the NIC recommended heavy doses of accutane, a vitamin A drug. Sloan Kettering also felt this might help. K started on this protocol but was getting weak. In early October her feet swelled and her energy level dropped. Still K fought and p became more powerful, urging K on. It was sad and beautiful at the same time. Kim was back and K liked that. K's liver swelled but not much. Climbing stairs was painful and as she and Make a Wish designed a new room, Karins Climb donated a stair climber.
K walked slower now, her legs and feet horribly swollen. But still she studied, watched Rosey and sat for her showers. P the great provider and protector. The room was great and she was also a Halloween host at the house.
On Tuesday Nov 4th she fell and strained her neck. My mother was helping out and P was working a Dickens schedule for work and K. now talked slower and lower. Her drive to study was gone and her appetite was low. p spoon fed her. On Friday the 7th I helped her in the car for her transfusion trip and on the ride up she was sleepy, weak, and tired. Still she didn't complain and helped me get her in the wheelchair at MH.
The transfusions of platelet's started, but Sarah told me her liver functions were weak. This was at noon. I went to get a sandwich and Anne sat with her. I offered K something to eat but she shook her head no. At five I couldn't get her out of the bed, and neither could T and Kim. We went on a fun ride, in her bed, to CHAD. I cracked some jokes and she smiled.
At CHAD Sarah said she was weakening and I called P. Linda flew her up. K was on pain medication, but comfortable. I worked Sat till three then headed north. K was dreamlike, but her eyes would open and P and I would talk to her. At Sam Sunday K was apparently uncomfortable and the Dilaud was increased. The angels left flowers for her and I showed her pictures of China. P and I constantly told her we loved her. At 10:30 her eyes would open wide and her beautiful lips started to tremble. Since July her nose and then her teeth had bled horribly as her platelets dropped. I feared this would happen now, but God spared us this last horror.
At 11:20 Sunday, with P and I standing over her, she left us in the company of angels. Sarah was there and her nurses, Anne, Pam, and the social worker came in to bid her good-bye. No words can describe my pain, my loss, and my love.
Dave and Linda were there for K, P and I and that was a blessing. The details of her funeral and the days after do not work to celebrate the greatness of K's life. The best testament was a Cathedral packed with her friends, and people who loved her and us. All can be stronger and more thankful for life, and heaven, from the courage and spirit shown by our beautiful daughter Kristen Elizabeth Xiggoros.
Perhaps someday I will have the will to fine tune and detail this journal. Now I focus on P and J and the steps needed to live a good life with the knowledge that an angel named Kristen (or Mushkie) will greet all of us with a smile, a beautiful face framed by long flowing hair, and a mischievous laugh.
