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Thread: Alissa Nicoleís Story + IMPORTANT QUESTION

  1. #1

    Alissa Nicoleís Story + IMPORTANT QUESTION

    Hi everyone, this is my first post! Iím Juliana Stockholm and my 10 year old daughter Alissa has stage 3 Leukemia and has had her leg removed due to osteosarcoma. Her god leg is also currently in a full leg cast. It all started on June 27th I took Alissa to the doctor to have her wrist checked out after she sprained it at cheer practice during a lift stunt. She complained of knee pain and had no injuries to cause it. So they tested her and found osteosarcoma deep inside the bone of her leg. There was no way to remove it other than amputation. Alissa had rotationplasty done and currently now is still receiving chemo for her leukemia. She has T Cell Leukemia which is rare in children. Sheís been using crutches for awhile and got her new prosthetic on October 22nd. Recently she got ammonia and her blood cell count has been very low. Right now Alissa is fighting for Her life. Her temperature has been low and high and her heart rate has been going too slow. She has a feeding tube and a Hickman line. She cannot eat or drink currently and hasnít woken up for a few days. Theyíve done blood transfusions and everything but donít know how many more things they can do for her. She canít even talk to us sheís so sick. Do you know of anything we can do? We live in Los Angeles and would like to take her to Boston for treatment but i really donít know what the best option would be for her since it would possibly stress her body out by transferring her. They said airlift would
    Be possible but I really want to consider what decision would be best to get my baby to survive. Anyone have any ideas?

  2. #2
    Senior User IndyLou's Avatar
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    Hello, Julianna--

    First of all, I'm quite shaken by your posting and this news. This news and disease must've hit you and your family very hard, and I can tell that you'd do just about anything to help your daughter get better. While I can't offer anything too specific, there are some wonderful members on this forum who might be able to offer some good advice.

    Can you tell us who is currently treating your daughter's cancer now? Which facility? I would think LA should have lots to choose from, but there are other better known cancer centers, particularly ones that specialize in pediatric cancers. I would maybe discuss with your child's current oncologist as to the best place for treating her, and then go from there.

    I do wish you the best, and I hope that your daughter fully recovers.
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED

  3. #3
    Super Moderator Top User po18guy's Avatar
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    A very saddening and clearly very trying story. As to moving her anywhere, is she healthy enough/stable enough to be moved? Does any potential treatment in another state have a reasonable chance of helping her? These are the two primary points as I see them. Serious consultation with her physicians on the west coast, as well as those on the east coast would be crucial.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measureable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease. Active surveillance is the course of choice.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 3 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans. Two lymphoid malignancies plus a myeloid malignancy lend a certain symmetry to the journey.

    Believing in the redemptive value of suffering makes all the difference.

  4. #4
    Quote Originally Posted by po18guy View Post
    A very saddening and clearly very trying story. As to moving her anywhere, is she healthy enough/stable enough to be moved? Does any potential treatment in another state have a reasonable chance of helping her? These are the two primary points as I see them. Serious consultation with her physicians on the west coast, as well as those on the east coast would be crucial.
    She woke up finally and said she ďfeels like absolute garbageĒ my mom lives in Boston and said she knew some pretty good cancer doctors who may be able to help her. Iím pretty sure now that sheís awake it would be a little easier for her. My mom has already talked to some people in Boston and they said that it all comes down to how the other doctors feel about it and what happens with her in the next few days. The doctors here in LA think that if they have not much else they can do, that Boston is a great option. Iím thinking Iím gonna do it. Having her grandma there might help her as well.

  5. #5
    Senior User IndyLou's Avatar
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    Juliana-

    I would highly recommend that you seek medical consultation with a specific cancer center, prior to moving your daughter. Perhaps your current oncologist/doctor could make recommendations. Unless your mother has specific medical knowledge, or works in healthcare, I would not necessarily move your daughter based on anecdotal recommendations. Physically moving your daughter should be a very well-thought out process, and into a comprehensive cancer treat center, with access to all treatments that your daughter might need to receive.

    In the Boston area, the Dana-Farber Center is well-known; Memorial Sloan-Kettering is an excellent choice in NYC; St. Jude Children's hospital, in Memphis, might be another option. Regardless of where you go, the center should be able to assess your daughter's situation in advance, as well as outline their plans for treatment, prior to moving her.

    I wish you the best.
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED

  6. #6
    Quote Originally Posted by IndyLou View Post
    Juliana-

    I would highly recommend that you seek medical consultation with a specific cancer center, prior to moving your daughter. Perhaps your current oncologist/doctor could make recommendations. Unless your mother has specific medical knowledge, or works in healthcare, I would not necessarily move your daughter based on anecdotal recommendations. Physically moving your daughter should be a very well-thought out process, and into a comprehensive cancer treat center, with access to all treatments that your daughter might need to receive.

    In the Boston area, the Dana-Farber Center is well-known; Memorial Sloan-Kettering is an excellent choice in NYC; St. Jude Children's hospital, in Memphis, might be another option. Regardless of where you go, the center should be able to assess your daughter's situation in advance, as well as outline their plans for treatment, prior to moving her.

    I wish you the best.
    Thanks! She got her cast off today and we talked to her and asked what she would think. She said now that she can talk she feels like sheíd be okay. They decided they wanted to watch her for a few days before doing it because we all decided it would be a good decision if she got better in the next few days. The reason why it may be a good idea is because if this happens again the outcome might not be good. Plus there are some good PT in Boston that my mom does know. She is also a physical therapist herself who mainly works with cancer patients. Right now sheís doing well and is really energetic. Still doesnít wanna go any farther than the bathroom as for moving but is doing well. Thank you for your help!

  7. #7
    Senior User Dead Man Walking's Avatar
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    Lifelong resident of Lake Woebegon (Minnezotah), moved to Louisiana last November
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    I would agree with Indylou. Do not move your child anywhere until you know the best options available. Not good options, not better options, but with a very sick daughter like that what may be required is a top 5 children's leukemia clinic in the US. With all due respect to your mother, she has an obvious bias for thinking that some of the doctors in Boston are good, but are they a) significantly better than doctors on the West coast or elsewhere, and b) are they really top 5 nationally??? This is a decision that you will have to live with for the rest of your life, and if you make the wrong choice you will never be the same person again. I am the survivor of a rather sloppy case of clinical judgement made before all the facts were known, and the original Mayo clinic was barely able to bring me back after I was transferred there. At age 67 it wouldn't have been a major catastrophe regardless, but at age 10 you have got to get it right the 1st time! So please make sure that any and all decisions are made with all the questions asked and facts available, and then move forward with your plan and the reassurance that you have made the best decision you could.

    My best wishes to you and your daughter in the months to come...
    05/6/16 pre-op physical for knee surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts CD34 with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo regimen TSHTF!! 3+7 doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six 4 week cycles of azacitidine, 21 injections over 7 days with 1.5" long needle into gut AND below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows CD34 cells 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Oncologist estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective

  8. #8
    Quote Originally Posted by Dead Man Walking View Post
    I would agree with Indylou. Do not move your child anywhere until you know the best options available. Not good options, not better options, but with a very sick daughter like that what may be required is a top 5 children's leukemia clinic in the US. With all due respect to your mother, she has an obvious bias for thinking that some of the doctors in Boston are good, but are they a) significantly better than doctors on the West coast or elsewhere, and b) are they really top 5 nationally??? This is a decision that you will have to live with for the rest of your life, and if you make the wrong choice you will never be the same person again. I am the survivor of a rather sloppy case of clinical judgement made before all the facts were known, and the original Mayo clinic was barely able to bring me back after I was transferred there. At age 67 it wouldn't have been a major catastrophe regardless, but at age 10 you have got to get it right the 1st time! So please make sure that any and all decisions are made with all the questions asked and facts available, and then move forward with your plan and the reassurance that you have made the best decision you could.

    My best wishes to you and your daughter in the months to come...
    I did consider at one point that maybe I should look elsewhere too. We arenít gonna be moving her anywhereís til we know sheís gonna be able to handle it so weíre gonna wait a few days to a few weeks. I havenít been able to research much cause Iíve been busy with work. I donít know if this is a step forward or not but Alissa decided she wanted to go swimming but she didnít want to go to the hospital pool so she decided to fill up the bathtub and swim. I guess thatís going forward! So she is doing better. Iím still not 100% sure weíre going anywhere because we still havenít asked Alissa if she wanted to and I own a business that Iím not sure if I can find another person to manage. I hope I can think of a sulution for this. Iíll ask her when shes done with her tutoring

  9. #9
    Senior User Dead Man Walking's Avatar
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    Well, I'm personally relieved that she's feeling better! Yesterday I realized that I had seen a child with this very condition, a 14 year old boy with leukemia, and one leg amputated just below the knee two days before, and he was in pretty bad shape. Sadly, even my therapy dog Annabelle couldn't cheer him up due to the high level of the pain, and this is a unique ring of hell for any parent that has to go through it. You have my admiration for being one tough lady, and I wish you all the best in your journey with your daughter.

    Sincerely, DMW
    05/6/16 pre-op physical for knee surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts CD34 with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo regimen TSHTF!! 3+7 doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six 4 week cycles of azacitidine, 21 injections over 7 days with 1.5" long needle into gut AND below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows CD34 cells 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Oncologist estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective

  10. #10
    Super Moderator Top User
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    Juliana, I'm so sorry to hear of your daughter's illness. Someone mentioned finding out what the top five pediatric cancer centers in the US are. To save you the trouble, i have looked them up. In order, they are:

    1. St. Jude's Children's Research Hospital, Memphis TN
    2. Dana Farber/Boston Children's Cancer & Blood Disorder Center, Boston MA
    3. Children's Hospital of Philadelphia
    4. Texas Children's Hospital, Houston TX
    5. Cincinnati Children's Hospital Medical Center

 

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