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12/14/2021 0 Comments June 6, 2019
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12/14/2021 0 Comments June 5, 2019Josephine passed away today at 2:35pm at Robert Wood Johnson University Hospital in New Brunswick. She was surrounded by family and friends who held her tight till she made it thru. The hospital staff was very supportive and made us all feel at home. Josephine had a smooth transition and she is finally in peace and free. Information about funeral arrangements will follow. We appreciate all the support we have received during this difficult time in the trenches. I am so lucky to have had Pepa in my life, so proud to have been her mom, it wasn’t supposed to be this way...but we don’t have a say... This is a card Josephine made for me when she was nine years old.  12/14/2021 0 Comments June 3, 2019Tough situation we are in. An irreversible brain herniation with advanced DIPG. Doctors who want to help Josephine pass and a strong girl who wants stay and live because she is missing her 8th grade dance and graduation. So much to live for, so many lost fun times and dreams of a life that were blossoming but here we are helping her end it. I feel sick in my stomach having to come to this, as many other DIPG families in the same predicament of a dead end street with no way out. Josephine is comfortable with high doses of morphine. This is the nightmare of 300 families every year in the United States alone with a society unaware and a government that chooses to look the other way. I am hopeful that we are changing this scenario, not for us but for your kids or your grandkids. No kid is exempt from the DIPG lottery. 12/14/2021 1 Comment May 29, 2019Our dream and happiness at Children’s Specialized was short lived. Josephine developed hydrocephalus (excessive buildup of cerebrospinal fluid) overnight two days ago and was transferred to the PICU of Robert Wood Johnson University Hospital located right next door. Her pupils were enlarged and unresponsive, the doctors installed an external shunt as they didn’t want to use the Omaya catheter to get rid of excess fluid. They were not comfortable tapping it. I was told there was severe brain damage and the prognosis is poor. I understand hydrocephalus is a common potential problem with DIPG and could have been avoided by installing a shunt in advance as a precaution. No oncologist wanted to do this in the big hospital in NYC or follow up on Josephine’s tumor at this very advanced state. I could not even get a doctor to order an MRI for her and see the status of the tumor in the past two months. Famous oncologists of this reputable NYC hospital don’t think it is worth pursuing treatment once the tumor is in progression. This is not how research facilities should operate. I am sorry we don’t have better news for us and for Josephine. She constantly put 100% of herself into fighting this disease and the system has failed her, not only for not having a hope of treatment, but also for not even trying. We are deeply grateful to you all for your support and prayers. They are the hugs we received throughout this long journey. In behalf of Josephine, thank you. 12/14/2021 0 Comments May 22, 2019Josephine did it again. After almost eight weeks, finally left the PICU when nobody thought she would. The PICU team of doctors and nurses were really good to her and we thank them for that. She had more periods of awakening and seems to be aware of the transfer to Children’s Specialized. She is still not interacting but rather receptive of touch, and sounds. She will be having a lot of stimulation with physical and occupational therapy, bathing, and a busy day overall. My goal is to become an expert at changing her inner trachea tube, and maintenance of her feeding tube. I expect to have the help of nurses once we go home, but I need to know what to do in the event that I don’t have help. The transition from Cornell ‘s PICU to Children’s Specialized acute rehab went smoothly so far and we are feeling tired and grateful tonight. God is meeting our needs one day at the time. Thank you all for your prayers and support, and for following up. 12/14/2021 0 Comments May 17, 2019I wanted to thank Josephine‘s school, Memorial School, for thinking of her today on DIPG Awareness Day and always. Josephine missed the Washington trip that she was hoping to go to today. The 8th grade students and teachers wore T-shirts with Josephine’s name on it. Thank you so much for thinking of her and for all the love. 12/14/2021 0 Comments May 11, 2019It has been a while here, we are approaching our 7th week at Cornell ‘s pediatric intensive care unit. It has been a roller coaster of entangled hopes and disappointments. Josephine has endured infiltrated veins, spikes of fevers, low blood pressure, elevated heart rates with periods of stability in between. The uncontrollable seizures have quieted down decreasing and damaging her brain activity. In her current state, she has been rejected from other facilities that would bring us closer to home. Pep sleeps most of the time with some periods of awakening but unaware of her surroundings. She responds to annoyance or stimulation thru fluctuations in her vital signs. We miss our old Josephine, she misses us, but we are still together. I am grateful I can still hug her and kiss her. She can still enjoy our touch and she knows we are here for her. That’s all we can do, love her as always. I wish I had better news. I wish I could report a miraculous recovery...but this is the reality of DIPG. She is still fighting it as the strong girl that she is. 12/14/2021 0 Comments April 30, 2019Hope this update finds you well. Josephine has done well with two procedures she had; the first one was a conversion of g-tube to a j-tube. The first feeding tube wasn’t reaching the intestines and her stomach absorption was poor due to the inactivity. She is doing well with the feedings now. The second procedure was done today. A tracheotomy was done to replace the breathing tube. She was intubated for almost six weeks. She was fighting infections and the doctors didn’t want to do these procedures last week. The first few weeks the doctors didn’t want to do anything but treat the seizures. Unfortunately the seizures didn’t go away but she is stable. Josephine will be transferred to the Children’s specialized hospital in New Jersey. She was there last year after the biopsy for acute rehab and she liked the place. Circumstances have changed since last year but the hospital is willing to help in every way, allowing ONC201 to be administered, and providing transportation for seizures treatments and/or second opinions. Josephine did some of her drawings at the Children's Specialized Hospital where she seemed to have gained faith and strength. She always remembered this place with warmth and gratitude. I am hoping they will help us find relief for those seizures and improve her quality of life. She is strong and has surprised the doctors here. She is fighting a monster in a very unfair battle but this is what we want. We want to fight back. She is only thirteen and death is not welcomed. Thank you for your continued support and prayers. We really appreciate your company. 12/14/2021 0 Comments April 25, 2019We are ending our 5th week at Cornell PICU. They have been unable to manage the seizures so they settled with 15 seizures per hour. There is a surgical procedure that could be done to decrease seizures when medication doesn’t work, but the doctors told me it’s off the table for her. She is still intubated and five weeks is a long time to be intubated. The Doctors canceled the tracheostomy that was scheduled for Wednesday due to an infection in the trachea. Still fighting the infection. The steroids that were given to her during the past five weeks decreased her ability to fight infections. Finally off steroids as of today, we are hoping for improvement and stability. The goal is to have the tracheostomy and go home with all the medication she is currently taking. She is still on ONC201 every Sunday the hospital allows me to give her this chemotherapy drug that we purchased in Germany. Planning to go back for more soon as her three months supply is depleting. We washed Pep’s hair today, she smells and looks pretty. The doctor put some pics of her on the wall. It was a nice gesture making us feel more at home away from home. I love giving her back and feet massages with aromatherapy lotions hoping she feels comfortable. They take good care of her here, sometimes needs to be enforced or followed up but for the most part she is in good hands. One day at the time and enjoying her company. I am hoping for miracle. They do happen sometimes.
12/14/2021 0 Comments April 18, 2019Every morning lean your arms awhile upon the windowsill of heaven and gaze upon the Lord. Then with the vision in your heart, turn strong to meet your day. (Thomas Blake) These are some views from our hospital window at Cornell. We are working steadily toward getting Josephine out of the PICU overcoming one obstacle at the time. Have a wonderful Easter and thank you for your support and prayers. 12/14/2021 0 Comments April 12, 2019Big thank you to the staff and the 8th grade class of Memorial School, Josephine‘s classmates, who organized a fundraising dance in Josephine‘s honor. She was supposed to be the special guest for the occasion but couldn’t make it as she is still at Cornell‘s PICU. These acts of kindness have made a difference in our journey. Thank you so much to all of you. After another meeting here at the hospital, it has been decided to decrease the seizure medication that is inducing coma (Midazolam) to be replaced with other medications. She has been stable for a while and the team feels comfortable enough to attempt transition into a regular room at the hospital and eventually home as I had hoped. This is good. ❤️ 12/14/2021 0 Comments April 7, 2019Josephine's status has not changed. We are still at Cornell where she has been induced in a coma due to uncontrollable seizures. This is a good hospital and a good team of doctors. We had a meeting last Thursday where we were informed that she will most likely not be able to overcome the seizures. They tried different combinations of meds all last week. They took the EEG off on Thursday to give her head a little break. It was nice to wash her hair and untangle it. I am still holding on to hope even when they tell me Josephine is not coming back home. It would be very difficult to go on without this hope I have. I asked if they would allow me to continue her ONC201 medication that we purchased in Germany as her tumor needs treatment. They will also continue to try balancing the meds in hopes of controlling the seizures. At this time of the year, we start making plans for spring and summer, spring break, camping, beach, and biking. Pep likes sunny days as much as I do. How can I ever enjoy a sunny day without her when she has been our sunshine? She lights up every room she enters with her smile and beautiful spirit. 12/14/2021 0 Comments April 4, 2019We are stuck between a rock and a hard place. Josephine’s seizures can’t be controlled regardless of medication. If we stop medication the amount of seizures will most likely caused death according to the doctors. We had a meeting with the team of doctors and had to decide what to do. The amount of sedation from seizures‘s medication causes Josephine to sleep. She has not woken up since last Friday, a week from today, when the procedure took place. She is still breathing with the ventilator. We are keeping her comfortable and I hope she is having beautiful dreams of all beautiful places we visited, birthdays and holidays we spent together as a family. I hope she knows and feels how much we love her. This is my favorite picture of our Pepa as a child.  12/14/2021 0 Comments March 30, 2019We were transferred to Cornell’s PICU and the seizures are not under control. They took 30cc of brain fluid thru the Omaya catheter this morning again to have hydrocephalus under control. The shunt is not an emergency as we have the Omaya catheter to take care of the problem for now. Breathing is still assisted. Low blood pressure has been controlled by the meds and a temporary central line access to the artery was placed by her leg as her veins are collapsing with so many IVs Seizures are not responding to meds. We are talking about suspending all meds and see if she could breathe on her own if not sedated. We'll decide after discussion with the team. I think she needs time and nutrition before we decide to make a move at all. She fastens her seatbelt on an airplane or car, she takes care of herself and doesn’t want to die. This is not something she wanted to even talk about, so we will wait for her as she deserves the best chance. 12/14/2021 0 Comments March 29, 2019Hope all is well with you all. We are still dealing with a lot of unclear status on Pep’s tumor activity with not much change in the images from February 28th. However, her symptoms continue to be a problem She is not eating or taking meds due to the swallowing issue being more pronounced. We opted for a G tube as it’s needed at the moment, hoping that she will recover strength with much needed nutrition and meds. The procedure was done this morning after a long sleepless night with lots of seizures. A scan showed hydrocephalus in one ventricle, the neurosurgeon took pressure off by taken liquid from the Omaya catheter. We are still at Memorial Sloan as Josephine is still not breathing on her own after the anesthesia. An EEG is following her seizure activity. I have been told we will get transferred to Cornell as they have a special team for seizures capable of following the seizures live 24/7. It’s been a really long day and we are hoping for her to get better. Will keep you posted and I thank you for your prayers and support. 12/14/2021 0 Comments March 14, 2019
It has been a while since our last update. The truth is I didn’t know what the update was myself. It has been very upsetting to watch Josephine losing functions like hearing and speech now without knowing why. The MRI images were interpreted differently by our local oncologist and the doctors in Monterrey. Here we were told tumor progression and Monterrey told us the problem is the white matter, possible Leukoencephalopathy, which is a byproduct of last year radiation. Josephine received her treatment in Monterrey on March 1st.
Given the discrepancy of opinions I made two appointments with different specialist in New York City. The first one at Mount Sinai agreed with the Monterrey doctors in the assessment. The second appointment was at Memorial Sloan and the doctor there also agreed with the doctors in Monterrey. However, they are going to repeat an MRI there next week in a way that will enable them to clearly discern between tumor activity and white matter or inflammation. The symptoms are contradictory but for the most part the tumors are stable. Bottom line when it comes to the brain, the treatments can be as problematic as the tumors themselves. We miss Josephine’s voice, she misses our noises and so many things. I wanted to share this thank you video she made last year when she was hospitalized in September 2018. There is also a pic from our 3/19 trip to Monterrey. My older son Jonathan helped us on this trip. Josephine is unable to say thank you right now, but we are hoping and working toward recovery. Thanks for your support and prayers.
12/14/2021 0 Comments February 23, 2019This month is the 13th marker since symptoms started and the 12th month marker since Josephine’s diagnosis. She had many losses since then but she is here with us and we are blessed. We won a few battles but the war still on. She feels pretty lonesome without being able hear. Communication is a challenge, eating is a challenge, walking is challenge, smiling an impossibility. Lost 20 pounds since December when we decided to take her off steroids completely. We rely on CBD now. Thank God for these therapy pets we have at home. They always come handy. Heading to Monterrey this coming week. Thanks to God for those good doctors there...thank God and Germany for her weekly ONC201. And thank you for your support and following.  12/14/2021 0 Comments February 15, 2019A fundraising event “Valentines for Josephine“ took place in our neighborhood parish. The support was amazing and we couldn’t be happier. February 15th happened to be the International Childhood Cancer Day and I cannot think of a better way to have honored it. On February 15th we also received great news of a new DIPG international treatment center in Zurich, which will be giving parents more treatment options. I’ll be inquiring about a peptide vaccine (immunotherapy) which is not available in the USA unless thru a trial. I thank you all for your support with Josephine‘s journey. We will be heading to Monterrey for treatment again soon and will keep everyone posted as usual! Thanks so much again. 12/14/2021 0 Comments February 10, 2019Josephine had a good week relearning to enjoy surroundings with the limitations of a wheelchair and loss of hearing. Pretty scary, but family and friends make it all better. From the Freedom Tower Observatory Josephine is watching the world and is still grateful. 12/14/2021 0 Comments January 31, 2019Josephine had her 2nd treatment yesterday and it went well. This chemo was done thru the Omaya catheter to target the ventricles, a problem area last year. It seems to be mostly under control but some symptoms continue to worsen. We are hoping to alleviate inflammation and necrosis with continued infusions of Avastin, fish oil vitamins, and CBD. Leaving Monterrey today. Thanks so much for following and continued support. 12/14/2021 0 Comments January 25, 2019Good news from Monterrey. The doctors in Monterrey looked at the MRI images taken on 1/24 in Hackensack, New Jersey prior to the Intra-arterial chemo. Images show further reduction of tumors everywhere. Again we are excited and so happy with the good news! More fuel for us! Very grateful! Bad news is the cerebral necrosis caused by radiation back in April and September which causes good cells to die too. Scar tissues in the brain have nowhere to go. This cerebral necrosis is causing the symptoms that are impacting Josephine’s quality of life. We are working on improving it. The avastin infusions she receives in Hackensack every two weeks are supposed to help with this problem. We continue the search for new options as always, trying to help God a bit... Millions of thanks for your support and prayers! Appreciated as always! Josephine says Hi! 12/14/2021 0 Comments January 16, 2019It has been a year since Josephine started showing signs of her brain tumor. New Year’s Eve to be precise...Pep was doing gymnastics when balancing problems started to surface. I would had never imagined the magnitude of the problem. A year later she is unable to maintain her balance at all and can’t walk without assistance. This doesn’t stop her from wanting to go places and enjoy life. We still go to movies, mall, spa for a relaxing facial or massage. Her grateful spirit is always optimistic and looking forward to tomorrow. The wheelchair has become an ally. The wind is not blowing her way so she adjusts her sails. We are heading to Monterrey soon for treatment and a new assessment. She has been receiving Avastin infusions every two weeks and ONC201 weekly. We are trying to improve quality of life by taking her for physical therapy and occupational therapy every week. Her teachers come to the house two hours every day to keep up with school. Josephine is not in pain, just uncomfortable with her facial paralysis as this impairs her communication and it’s a bit frustrating. Of course this doesn’t stop her from chatting. She manages to get her point across. She still has some absence seizures, but I have replaced Kepra with CBD and she has lost a few pounds. She is also off steroids. Avastin has taken its place. Thanks so much for following and let’s hope for improvement. I had to update our fundraising goal to reflect actual medical expenses since February 2018. Kindly share our fight and donate if you can. No amount is too small and it’s greatly appreciated.
12/14/2021 0 Comments December 21, 2018We want to thank everyone for the support received and wish you all Merry Christmas and Happy New Year. We are tremendously grateful that Josephine is stable as we are approaching the year marker from her devastating diagnosis. I can only thank you for your prayers, kind words, and good thoughts. I hope not to bore you but I made a summary of all the things that our brave warrior has gone through this year without ever complaining; happy and positive as always. Please pass along to those I might have omitted if interested in our news. Thank you. DATE Procedure Location Notes 4/9/2018 thru 05/18 30 rounds of radiation Columbia Presbyterian Hospital 6/18-7/18 Nivolumab trial -Intravenous Infusions Columbia Presbyterian Hospital 7/18- 8/18 None-Applied for trials but we were denied because of progression in the ventricle area Memorial Sloan Kettering Progression in the ventricles spreading like a wild fire. 8/13/2018 First Intra-Arterial and Intrathecal Chemotherapy Hospital Los Angeles-Monterrey MX Doctors recommended Omaya catherer implant to treat the ventricles and radiation in the ventricles to slow down progression 8/29/2018 Omaya Catherer Implant Surgery Columbia Presbyterian Hospital 9/7/2018 Intra-arterial and Omaya chemotherapy Hospital Los Angeles-Monterrey MX 9-10/9-13 IV Emend Clinica 0-19 Monterrey MX 9/13/2018 Omaya chemotherapy Clinica 0-19 Monterrey MX 9/22/2018 ONC 201 Chemotherapy pills -started weekly Shipped from Germany 9/24-10/4/18 8 rounds of radiation -Ventricles Columbia Presbyterian Hospital 10/12/2018 Intra-arterial and Omaya chemotherapy Hospital Los Angeles-Monterrey MX 10/18/2018 Omaya chemotherapy Clinica 0-19 Monterrey MX remarkable improvement as per new images 11/5/2018 Intra-arterial and Omaya chemotherapy Hospital Los Angeles-Monterrey MX 11/9/2018 Omaya chemotherapy Clinica 0-19 Monterrey MX 11/19/2018 Avastin intravenous Infusion Hackensack Meridian Hospital 11/28/2018 Intra-arterial and Omaya chemotherapy Alfa Medical Center -Monterrey MX tumor stable. 12/1/2018 Omaya chemotherapy Clinica 0-19 Monterrey MX 12/10/2018 Avastin intravenous Infusion Hackensack Meridian Hospital 12/17/2018 ONC 201 Chemotherapy pills -six month supply Dr.Arnhold-Frankfurt Germany Immunotherapy is in the horizon for next year. Happy Holidays and God bless you All. Patricia/  12/14/2021 0 Comments November 27, 2018A quick update from Monterrey... Josephine had an MRI done in Hackensack, New Jersey on Monday 11/26. We brought the disk to the doctors in Monterrey to review the results and compare to the 11/06 MRI. We were pleased to see improvement. I also called Hackensack Medical Center to get their assessment and they concurred with the findings. A report issued by Hackensack, New Jersey will follow to confirm these findings in writing. I was pleasantly surprised and full of hope again. I was told the worsening of symptoms Josephine has been experiencing could be related to the tumor dying. Not to say we have won this war, but winning small battles gives us new energy to continue the fight and renew our most needed hopes. Josephine had her treatment today at Alfa Medical Center in Monterrey, of course with the same doctors. I chose to try this hospital to save hospital costs. The place is humble but clean, the procedure and the doctors don’t change. Food was good, we are happy, life is good. She will have a second chemo treatment thru the Omaya catheter on Saturday and we’ll head back home Sunday. Thanks for the support and prayers. They seem to be working. God bless you all. 12/14/2021 0 Comments November 23, 2018Hope everyone had a good Thanksgiving day in company of your loved ones. Very grateful here for having all my kids next to me. Josephine was looking forward to this Thanksgiving. We had a full table, but unfortunately she was unable to enjoy the food....swallowing problems are getting worst and a strict soft diet needs to be followed. Persistence coughing and lots of phlegm are causing fever, throat irritation and hoarseness.... Amoxicillin seems to help for short periods of time then we fall under the same cycle again...we had been told that a nasogastric feeding tube might be needed at this point to avoid complications related to aspiration of food or drinks, however that wouldn’t help her choking on her own phlegm which is a major problem right now.... Josephine is having an MRI Monday and treatment in Monterrey Tuesday. If these symptoms do not improve, re radiation in the pons will be considered...very soon. We are very grateful for your continued support and prayers. Please share Josephine’s journey. Any size donation is appreciated as our medical expenses are very high....Thanks again for accompanying us in the darkest path of our lives. May the light shine upon you always.  |
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