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| Updates on Hudson and Abella's Journey | ||
August 11 After nine months of oral chemotherapy, Abella was taken off the medicine in fear of its long term use creating other problems. We are looking into putting her on a bio-agent if it makes sense for both of her types of cancer. So…with change comes worry; but worry is wasteful in times like these. We will continue to monitor her with MRI’s every three months. Hudson was honored at our Public Library last week with a plaque, art piece and a donation to buy books about birds. It was a special tribute in Memory of Hudson and to dedicate the Life of Abella. It made the front page of the Orange County Register: http://www.ocregister.com/articles/hudson-abella-wyss-2113597-aliso-tumor As we mourn the loss of our son; we also mourn the loss of other children who have also lost their battle to cancer. Too many children are in a Fight for their Life and too many children have Lost the Fight. This week is our 10th Annual Soccer For Hope event and it will certainly have a different meaning behind it. We will do our part to give back financially to the hospitals that have cared for our children over the past three years. We come away from camp every year with true gratification knowing we are doing our part; attending to our calling. It is up to us to fund research and educate the community if we want to see change. July 14 As we headed back up to Children’s Hospital of Los Angeles for Abella’s routine MRI, a lot of emotions ran through our veins. Going to LA without Hudson in tow was very difficult; to say the least. We left the hospital having great results for Abella’s scan with stability and no sign of the Choroid Plexus Tumor. We needed this break desperately and are so pleased with the good news. Overall she has been doing really well adjusting to our new family life, with just the three of us. I don’t think reality has set in that we won’t have our sweet Hudson as a friend, as a playmate or as a leader. It almost feels like a holding period and our home just doesn’t feel like home anymore. We are grieving parents; giving our best effort to remain in tact while continuing forward and taking on the shortcomings of life. We find it so challenging to write updates since this dramatic change but will certainly not stop at anything to press the issue of one day finding a cure for childhood cancer. June 26 As we approached the day of Hudson ’s Memorial Service we were all anxious for many reasons. We hoped the service would be worthy enough to represent his life, his struggle and his beauty. We were unbelievably shown by more than 600 people how much Hudson meant to them. We felt everyone’s Love wrapping around us during the service which made for an experience unlike any other. Thank you, everyone, who was present for the service or those who were present in spirit. We were carried through the day on the shoulders of our dearest family and friends as well as the support of many who we have never met. We will miss Hudson ’s smile, his big baby blues, the sound of his cheerful greetings, the warmth of his hugs and the comfort of his kissies. Our hearts are filled with special keepsakes and these loving memories will be solace for our grief. We learned something new from him everyday and his battle with cancer changed our philosophy of Life. Only through his experience of trial and suffering did our souls strengthen and become enriched. When we were weary Hudson kept our focus on the task ahead while taking on life’s most enduring obstacles. He has taught us the meaning of Integrity and to make the painful bearable. His journey will continue to influence thousands of people although he is no longer with us. Hudson ’s name will be forever cherished… representing triumph and tragedy. The beauty of his soul will shine on and our dream is to keep that spirit alive. We had the privilege of his presence for only 1,384 days and although he is gone, too soon, his Love will always beat in our hearts. June 18 Hudson’s Memorial Service will be held on Wednesday, June 25th at 10 am. Presbyterian Church Of The Master 26051 Marguerite Parkway Mission Viejo, CA 92692 In lieu of flowers, we are asking for donations to the Hope for Hudson Fund. All proceeds will benefit the Pediatric Brain Tumor Research Fund at Children’s Hospital of Los Angeles. Thank you in advance for your consideration. Soccer For Hope Attn: Hope for Hudson Fund 25255 Cabot Road Suite 116 Laguna Hills, CA 92653 www.soccerforhope.org June 17 Our family is deeply grieving and mourning the loss of our Hero who has fought a lion’s share. He was comfortable and deeply sedated at the time of his passing on Monday June 16th at 8:10pm. We were both holding his hands and telling him it is okay to let go, that we were so proud of him and how much we Love him. We watched his chest rise and fall one last time and we knew he was listening to us as he did not breathe again but did in fact let go. His soul left his body at that moment and he was free. Free from cancer; free from pain. Our sweet Angel will forever be missed and our lives will never be the same. Hudson Wyss… Forever 3! We will post the Memorial Service Information scheduled for next week within a few days. June 16 Hudson has passed peacefully. There are no words to describe our sorrow. FOREVER IN OUR HEARTS... June 14 This has been one of the most difficult weeks our family has experienced. Hudson came into the hospital with the possibility of a short stay if we could get the brain swelling and his pain management under control . We tried for several days to use a high dose steroid and had very limited success. The realization of him not coming home has hit us hard. His pain has continued to climb and his comfort has been really difficult to attain. His days have consisted of long periods of sleep and then wakefulness with irritability. The steroid used for the severe edema in his brain also caused Hudson to be restless and sometimes inconsolable. He’s had some good moments though of jokes, songs and silly comments but that usually only lasted for minutes at a time. He would then say “ouchie” and “I need a bandaid” because his head hurts. We realize that we only have a limited amount of time left with him but we have had some precious moments together which will remain with us forever. June 10 Hudson was admitted to Children's Hospital of Orange County on Monday with severe pain as well as weakness in his left arm. We started seeing changes in his pain on Thursday which led us to increase the dose by 30 percent. His comfort improved but his energy and appetite remained low. He started refusing to take his oral meds by Sunday and would kick, hit and spit out everything that came his way. His body began having withdrawals and he was inconsolable, crying and in a lot of pain. We began giving him IV meds for his pain but the effects only lasted a few hours and then we would be back at the beginning again. We could not find the right combination for him at home and decided that it would be in his best interest to admit him. Hudson was given a CT scan of his brain to see what was causing so much agitation. It showed that he had a lot of edema in his right side and a few new lesions. He still cannot move his left arm and is acting very frustrated and uneasy. He is on a PCA (pain pump) and is getting most of his meds intravenously so he can sleep and recover comfortably. We are hoping he will regain movement in his arm and we have gotten most of his issues under control. We should know more in the next few days which direction we are going and if he will be stable enough to bring him home once again. June 3 Over the last few weeks we have been able to reflect on our family’s journey. Although the trials are highlighted in our minds so are the victories. Hudson ’s incredible gift of love has carried us through this maze daily and our relationship with him has recently grown and evolved tremendously. We have been given more time with him than we ever expected. More time to hold & kiss him, more time to be silly and more time to make memories. For what reason, we believe it to be a time of bonding and family togetherness like we have never experienced. As our lives shift and our paths change, we have come to realize what is truly important. “One word frees us of all the weight and pain in life. That word is Love.” Sophocles. May 21 Hudson is still fighting so hard everyday to maintain a somewhat normal life. His appearance has changed since he is retaining so much fluid from the steroid and he is off balance from all the weight he has gained. He has fallen a few times and worried us, since he could bleed internally, but thankfully they have only been minor scares. Hudson has needed another blood and two platelet transfusions in the past week which have made for a few long days in the hospital. Right now his favorite pastime is stickers & more stickers along with mini golf in our family room. At times Hudson feels good enough to play and other times he will sit, turn quiet and usually tells us his head hurts. We have upped his pain meds again and the dose is now 20 times higher than where we started. We are so grateful for the many helpful medicines which allow our son to maintain quality of life. May 9 Our Hudson continues to amaze us each and everyday and he is still walking around 11 weeks after his recurrence. He is doing so well, all considering, and really felt more energized after today’s transfusion. His seizures are under control now and his mind is rarely absent. He is however getting frustrated with how many times a day he has to take medicine. We now have to bargain with a song and a reward to get him to take more than a dozen meds by mouth. It is only expected that he is showing refusal and wanting to have some control in this difficult situation. May 2 Hudson started having petit mal seizure this week and was really absent most of the time. He would just stare and looked glazed over until we would call his name and he would come back to us. Each seizure lasts only seconds but we think that he was having more than 50 each day. We added a second anti-seizure medicine to help him regain consciousness and so far it has helped a lot. He is hanging on each day and wants so badly to play but after a few good minutes he is ready to rest again. Hudson needed blood and platelets today which hopefully will keep him comfortable and maybe give him some more good times with us. April 26 Abella’s MRI this week went very well and we got very good news. There is no sign of the Choroid Plexus tumor and the glioma showed less activity on her MRS scan. We were very pleased with the results from both her scan and blood work which gave us a short sigh of relief. Hudson has shown us new signs that he is in pain so we have again increased his meds. Everyday he gives an incredible amount of effort to remain active and keep up with our busy Abella. He refuses to have a nap but he is slowing down and sleeps more hours during the night. We are constantly evaluating him to make sure he is comfortable and has everything possible to make him feel safe and secure. April 21 Hudson has continued to have good moments this week since we put him on a new steroid. The swelling in his brain caused so much pressure which resulted in severe symptoms last week. We are grateful he has stabilized and is more active but as expected, with new medicine comes more side effects. He is very irritable and can be mad one minute and happy the next. He is no longer napping and has a lot of wakefulness during the times he should be resting. We know his days are numbered since the tumor is now estimated to be over seven centimeters wide and pressing against his midline. We have continued to talk with Abella about Hudson ’s cancer progressing and started reading books about the lifetimes of animals, plants and people. She is taking to them well but not asking a lot of questions just yet. Abella is scheduled for a routine MRI tomorrow and she won’t be happy knowing she will need an IV and be sedated for the tests. It is always a challenge to switch our focus from one brain tumor patient to the other but we find the strength from our two children who have always faced cancer head on. April 15 For the past week Hudson has felt okay and only needed occasional breakthrough pain meds. However, this morning he woke up with severe pain and crying and has slept most of the day due to the sedative in his narcotic. Mornings are the most difficult time of day for him since most of the meds have worn off and the pressure in his head is high from lying down. Hudson ’s body has started to show obvious signs of his growing brain tumor and it is truly awful to see him struggle. He has rapid tremors in his hands, drooping facial features, swelling, vomiting, and pain. As Hudson ’s parents, we find it remarkably difficult knowing the cancer is growing and yet we feel so helpless. We can only monitoring his symptoms to keep each day left in his life as positive as possible. It is absolutely unjust to have fought this battle for so many months and to have the end result be: defeated. The sleepless nights in the hospital, the effort, the worry, the sadness and most of all the crying should not have been our way of life. But it has, and this experience has shaped our family. We must continue on with our fight for Abella and so many other children with cancer because Life is Precious! April 7 We all agreed that Hudson should have an MRI of his brain and spine so we have a better idea of where we stand. The unknown is frightening but the known is far more difficult. The scan showed both good and bad news. The good news is the spinal tumors are not growing much which means he shouldn’t have back pain or become immobile from it pressing against the spine. The other part of that is the cancer on the lining of the brain has grown very slowly so he is not at a huge risk for seizures. The bad news…the tumor in the left frontal lobe has grown significantly and has begun to bleed. Things could go very quickly from here and we are watching him very closely for severe, acute headaches or unconsciousness. We were not expecting good news to come from this scan and really debated whether to get an MRI in the first place. But it is better knowing where the most prevalent tumor growth has occurred, a timeline and what the outcome will probably be. We met with his oncologist and the neurosurgeon separately and they both remarked how well he was moving his right side considering a massive tumor in his head. He is such an inspiration to so many and always will be. April 4 We have continued to adjust Hudson ’s meds since he has been having more issues with pain, nausea and dizziness. We seem to have things under control and it is truly a science to find the right combination for him. Hudson ’s little body is so sensitive to medicine and he metabolizes it much differently than most people. Even just a small dose of an opiate will cause him to really feel the side effects and become drowsy. This is a good issue to have so we don’t have to use such big doses for him to feel better. Hudson’s favorite pastime is to be at home with the family. He loves his movies, stuffed animals and always wants his “sissy bella” nearby. He has felt well enough to join in our Art Therapy handprint projects and even good enough to go to the park and play soccer with daddy. Yesterday our family had a great night at the LA Galaxy home opener where the kids got to go down on the field, meet the GM, the new head coach and some of the starting players. Afterwards we watched the game from the suite and Hudson even got a big smile from Victoria Beckham as we were leaving. What a Stud!!! March 26 Hudson is still doing okay and is abiding by his own rules; as he always has throughout this entire journey. Hudson’s blood counts have remained low and he again needed a blood & platelet transfusion. We were hoping it would give him more energy and strength but it seems as though things have been changing in his body recently. He is more tired, acts more irritable, has thrown up a few times and has needed more pain meds throughout the day. When he does get the narcotics he usually gets hyper or loopy but at least he feels better and continues to laugh and play. We had such a special day today visiting the LAPD Academy and the Air Support Team in downtown Los Angeles. We were given a private session with a Lieutenant in the most challenging unit of SWAT. The kiddos got to dress in bullet proof gear, play in an armored vehicle and even buy fun police memorabilia at the gift shop. Afterwards the Captain of Air Support gave us a tour of the helicopters used to patrol the city and went in the control tower to watch an awesome flyby. A HUGE thank you goes out to the LAPD for making this day so special for the kids. March 12 Ever since Hudson ’s initial diagnosis he’s had so many odds against him. But now he is truly fighting for his life against multiple brain tumors, spinal tumors, MDS or “pre-leukemia, hemophilia and the p53 genetic mutation. What a life this boy has been given with more than 15 centimeters of brain tumor, ten surgeries, 62 radiation treatments to his brain, 11 different chemotherapies, and more drugs than most could handle. It wouldn’t be fair to him to give our precious boy any more treatment. We try our best not to look back and we cannot look ahead…we must focus on the present and live for the moment. When he wakes up in the morning we think to ourselves “is this the last day he will be feeling good” or have the desire to engage in activities. This fear lingers and the onset of constant pain that he will soon live with seems too near. Beyond all this he has continued to do well so we have planned many special days for him like going to a paint & glaze shop, beach walks, miniature golfing and even gymnastics training. But most importantly we have all been together and Hudson ’s smile is so contagious! Abella understands that Hudson ’s cancer has come back and he will spend more time in the hospital. We have explained to her that she needs to try her best to be as nice as possible to him since some days he won’t be feeling good. She asked us “what if my cancer comes back” and our hearts absolutely broke. Abella is very savvy and tuned in to what is going on although she does not understand why or what the future holds for herself or her brother. We are working with social workers to make sure all her insecurities will be addressed. March 2 For the past week we have been very busy spending most of our time having fun and making memories. We are focusing on the importance of family time while Hudson ’s energy is good and his spirit is lifted. Hudson had his Wish Day at Disneyland and he really got the special treatment. We were picked up in a limo, taken to Disneyland and had a private character meet and greet with Mickey, Pluto and Winnie the Pooh. He loved every minute of it and smiled from ear to ear the entire time. We spent the night and the next morning had breakfast at Goofy’s Kitchen with many more characters. We also were treated by a good friend of ours to sit courtside at a Lakers game, have dinner in the Grand Reserve Room and even meet the players like Kobe , Lamar, Gasol, etc. The entire evening was truly first class and we were so touched by his kindness and generosity. Hudson was so into the game that a photographer turned around to take his picture: http://cbs2.com/slideshows/Lakers.Heat.20.665617.html?rid=12 The situation we are in is truly confusing to us because he looks so good on the outside but on the inside his body is so sick. We know that each day the cancer cells are reproducing and are slowly spreading. But Hudson is such a strong boy who has lived with pain for so much of his short life. We have always known that his pain tolerance is incredibly high almost to resemble a cartoon superhero. So we have learned to be sensitive to his signs; like looking for a needle in a hay stack. He is amazing in so many ways and we wish we could have him here longer; time is passing too quickly. February 23 For the last few days we have been overcome by emotion. We still cannot except that we will lose Hudson but we are realistic in the sense that the cancer has taken residence and is incurable. We are depressed and upset that he has fought so hard for so much of his life and the outcome is incomprehensible. He has overcome so many obstacles and has tirelessly fought his way back to being a healthy boy. We have all put our best foot forward to help him beat this disease and keep him safe from harm and infection. But his little body has been beaten up so many times and the toxic chemotherapies he received have weakened his immune system and ability to fight off this aggressive cancer. We knew his survival rate was in the single digits after two recurrences but we held on to hope. The doctors truly believe it is a miracle how well he has handled such invasive treatment and has continued to grow up and thrive. We are already working with a pain management team to make sure even a headache will be relieved with good medicine… We realize time is precious and every time he says “I Love You”, every kiss & every hug he gives us is bittersweet. We are thankful to have some more special time with him before things turn around. Hudson has been a brave soul and will always be remembered to us as a true warrior. He is our hero. February 19 Hudson’s follow up MRI on Monday was not what we expected -his brain tumor has returned again. It is in multiple areas of his brain and now in his spine. After 2 ½ years of surgeries, chemotherapies, radiation treatments plus two clinical trials the doctors feel that more treatment is not in Hudson’s best interest. This is a battle he cannot win. February 14 Abella had an MRI of her brain yesterday and we got good results. There is no sign of the Choriod Plexus tumor and the glioma in the front was unchanged. We were truly relieved and couldn’t fathom what our lives would be like if there was any new growth of either tumor. This gives us the go ahead to focus on the bigger issue at hand… Hudson ’s Bone Marrow Transplant. City of Hope has received five blood samples from five potential donors and so far has the low resolution typing complete and encouraging. We are waiting on the High Resolution typing which should be finished by next Wednesday. Hudson is scheduled for a follow up MRI of his brain and full spine on Monday. This is a very important factor for his upcoming treatment since many physicians nationwide believe that he is most at risk for recurrence of the cancerous brain tumor than anything else. We will be on edge and very anxious for results while trying to keep our focus on the task ahead of us. January 31 To start off, City of Hope has completed the High Resolution HLA typing and found many matches for Hudson. Yeah!!! The next step from here is for the National Marrow Donor Program, based in Minnesota , to contact the requested donors. They initiated their search with 12 donors; all young males and most with the same blood type. The donors will have to get an appointment to have their blood drawn and then ship it to City of Hope to confirm it is a true match. It is always a waiting process and we will just need to be patient until everything is complete. Hopefully we can get Hudson into transplant within four weeks, if everything goes as planned. Hudson will still have to have a lot of pre-BMT work-up (MRI, echo, kidney scan, surgery…) which has to be done within four weeks of transplant. So we are also waiting to schedule these tests until we come closer. The type of chemotherapy we will be using, standard dose or reduced-intensity, will be determined if his organ functions are normal. So basically there is still so much ahead of us and so many decisions to make. Abella has continued to do very well. She only needs to have her blood drawn once a month and it is a peripheral stick since her central line was removed last month. It was drama on Monday when she needed to be poked and since she tensed up she blew the line and we had to stick her again. Thankfully her labs came out great and she won’t have to go in again for a month. January 24 As these last two weeks have gone by, Hudson ’s new diagnosis hasn’t gotten any easier. We feel torn over his ongoing treatment and frustrated that his normal childhood is being pushed farther and farther away. There are so many decisions to be finalized in the coming weeks that many physicians across the country have been tirelessly planning. Decisions like which facility, which chemo regiment, Cord blood or Bone Marrow and how soon can all of this take place. It feels like a time bomb counting down on how soon we can get him into transplant before his current MDS changes into leukemia cells. The only reassuring part of this is that Hudson is really doing so well right now. He is Strong! He is energized, happy, eating well, sleeping well and most importantly his mind set is lifted. This is such an asset knowing he will be so weakened from another hard round of chemotherapy. Since his immune system is still suppressed he does have limits on where we can take him. But mostly he enjoys spending time at home, in his comfort zone, and having guests come and visit. As for the Bone Marrow match we are still waiting on final results to come back; the High Resolution part. But City of Hope has found multiple potential matches and have told us they were 99% sure they could find him a perfect match. Percentages are usually out the window for us but we will certainly post immediately the final results as we receive them. January 12 As these last few days of waiting have been difficult for us all, it is even harder to realize what is ahead for Hudson . He was diagnosed with Secondary Myelodysplastic Syndrome which was caused by his extensive treatment with radiation therapy and chemotherapy. MDS is also known as “pre-leukemia” where the bone marrow does not function normally by producing enough healthy blood cells. If left untreated it will turn into AML which is even harder to treat. He was also diagnosed with a virus in his bone marrow known as EBV. Many healthy people carry this virus with no symptoms but because of Hudson ’s lowered immune response he somehow picked it up. The Doctors believe this is also suppressing his marrow and they feel it is best to wait it out. Hudson will need a Bone Marrow Transplant from a foreign donor and will be given more chemo to wipe out his remaining marrow. We will draw his HLA typing on Monday and begin the process of finding a match for him. We have started the consultation process and are looking into the top pediatric transplant centers nationwide. We are scheduled to meet with the Director for Pediatric Transplants at City of Hope on Monday to discuss our situation. We absolutely have to take into consideration all aspects of treatment from Hudson’s long medical history. He will need a lot of new testing done to make sure his body is strong enough to go into a transplant like an echocardiogram, kidney scan, lots of blood work, etc. We have many hurdles to jump over before we reach the actual transplant. Right now we are just finding our way through the dust, again, and trying to put life into perspective. January 9 Hudson was immediately scheduled for a Bone Marrow Aspiration and Biopsy today due to his continued low blood counts. As expected, the initial smear came back with some very concerning news; the marrow is producing abnormal cells. There is a slight possibility that it is a virus causing these cells to produce abnormally but the footsteps lead towards this being MDS, or Myelodysplastic Syndrome. This would mean that he will be challenged with a bone marrow disorder and have to go through more intensive treatment. These are our initial results and it could take up to a week to get the final analysis. As you can imagine we are just devastated and saddened to think of our precious Hudson facing yet another battle, and one on a completely different front. He will be followed by the Hematology team more closely now and we are AGAIN exploring all of our options to treat this disorder if yet in fact it does end up being what the doctors fear. January 7 Our families’ holiday season was overall smooth. We got to enjoy some special time with family & friends and we were so thankful that we didn’t have either child in the hospital this holiday. Since both kids are doing well we really got to have many fun-filled days that we haven’t gotten to in quite some time. We took a quick family vacation which was so perfect and long awaited. This really gave us a chance to reconnect, relax and laugh. We haven’t had a family trip, apart from our medical needs, in over two and a half years and we were grateful for this time together. Hudson’s blood counts have continued to remain low and he has needed again a blood transfusion and is still on immune boosting shots. His body is responsive to the shots but as soon as we discontinue them his immune system drops off. We are frustrated that he just cannot sustain his counts two months out of his last treatment and are moving to try something new. We are getting the Hematology team involved and Hudson will probably have a Bone Marrow Aspiration with sedation soon. This should tell us, from the source, what the issue is. So this pushes his central line surgery farther out until he can fully recover. On the other hand, Abella is doing great and was so excited for school to resume. Not because of her love to learn grammar but because she is a social butterfly and misses her friends! December 13 Abella had an MRI of her brain yesterday and the results were good. Their was no sign of any re-growth of the Choroid Plexus Carcinoma tumor that was completely removed last March and the low grade glioma sitting in the front was unchanged. Abella could live with the glioma her entire life without worry but we are treating it almost daily with her oral chemo to be on the safe side. It still amazes us that our sweet little girl could have two different cancers in her brain at the same time and we were trying to “kill two birds with one stone” with her high dose chemotherapy. We were again nervous for her MRI since the CPC tumor has presented itself, in Hudson , to be very aggressive. Both of the kids will have follow up MRI’s in two months (instead of the usual three) to monitor them closely. We are grateful for these results. We have continued to search for answers for our children’s genetic mutation and have sent tumor tissue, blood samples & buccal swabs to hospitals that are leaders in the field of genetic research. We are all trying to understand the triggers of this gene and are hoping that the research being done will someday benefit our family and many other families who carry this same gene. It is draining for the kids to always give blood, etc. but we are hopeful that our turn has come to rest, recover and enjoy this holiday season together at home. December 7 Well to start off Hudson had a routine MRI yesterday of his brain and full spine and we got great results. Hudson has no sign of cancer in his brain or spine and we are just thrilled!!! We did have a small scare on Tuesday when he complained of a headache & earache and of course our minds raced. We did have his ears checked and found no sign of any infection. Hudson ’s blood counts are still continuing to drop and he has needed blood and more shots to help stimulate his bone marrow. Hudson has been tired from his low counts but overall doing great and progressing. Abella has continued to take her oral chemo now for almost three weeks and is still doing good with it. Her blood counts have held steady & strong but her appetite has decreased slightly. This chemo doesn’t cause hair loss and she is so proud watching it growing in. She said she wants her hair to grow longer than princess Jasmine’s! Abella also has a routine MRI next Wednesday and she is also scheduled for surgery to remove her central line on December 19th. We are so grateful to have some good results; especially around the holidays. But we are still so involved in follow up care from therapy for both children. MRI’s, transfusions, clinic appointments, labs and surgery are all still a BIG part of our lives and we are hoping that our many medical issues will subside as we enter the New Year. November 21 We have been spending a lot of time at home all last week and it certainly has been special. When we first arrived back home Hudson ’s insecurities held him back from having any fun. He didn’t want to engage in any playtime, DVD’s, car trips or even his favorite: shooting baskets out front. We were hoping he would just go back to his normal routine when we returned home but it seemed he just wanted to lay in bed a lot and recover. His blood counts were low and he did test positive for a GI infection so that also played a part in his sluggish behavior. He still needs shots to boost his immune system and is on a medicine temporarily for his thyroid replacement. He has, however, come out of his shell and has slowly found his footing. He will now play out front, watch TV, dance, laugh and eat an entire meal. He still puts up a fight when it is bath time or changing out of his pajamas but it is probably the vulnerable aspect he is frightened of. Overall we are pleased with his progress and encouraged to see him happy and moving forward. The team of doctors at CHLA have for the first time in two years and four months decided NOT to put Hudson on any new medicine. He will not be on any type of bio-agent, oral chemo, IV chemo… just a prophylactic antibiotic on the weekends to prevent against bacterial infections. We were very nervous at first and couldn’t understand why he isn’t going to be on anything. But they have explained that if the cancer cells were this resistant it would grow back over any medicine given at a low dose. After his recurrence this last June Hudson has been through two craniotomies to remove tumor, six weeks of localized Radiation, seven weeks of chemo, a shunt surgery and two Clinical Trial courses using targeted antibody therapy. He has had the kitchen sink thrown at him and now it is time for him to recover. Abella has started her oral chemo which will be daily, Monday thru Friday, with the weekends off. So far she has handled it well with no immediate side effects like nausea or vomiting. We will check her labs weekly for the next month since this can affect her blood counts and she could need transfusions. This new phase for Abella will soon become routine and just be part of her nightly bedtime routine. Hopefully before Christmas we will be able to remove both of the kid’s central lines and bath time will again be normal and fun, YEAH! November 12 Hudson was admitted on Tuesday and received his fourth and final radioactive antibody treatment on Wednesday. His body hasn’t recovered from the last injection and he needed shots to boost his immune system, blood and platelets. He handled the injection just fine and was released on Friday. However, he has been struggling with the psychological aspect of this therapy. It is so emotionally challenging for him to be held down so frequently and stray jacketed for a 30 minute scan. Hudson doesn’t have any sense of security from the unstable lifestyle he has led for way too long. With time he will regain that confidence and will start to let go of this emotional baggage. We flew back to California and are hoping to just stay home so we ALL can recover. We are pleased that Hudson was able to complete the very promising clinical trial and are hoping that this was the last step in our quest to cure him! Both kids have clinic visits this week in LA for labs and evaluations and Abella is expected to start her new oral chemo by next week. November 1 We arrived in New York on Sunday and both kids enjoyed the plane ride and courtesy limo pick up. Hudson was admitted on Monday evening and received his test dose on Tuesday morning. He has been battling a cold which made for more tests and worry. After multiple scans and shunt taps the doctors were pleased how the medicine flowed through the brain and spine. Hudson is getting a few days off to recover and will be ready for the actual treatment dose next week. Abella has been enjoying New York and gets to spend a lot of time with Grandma at the playrooms, toy stores and parks. We are thankful for the next few days to have some quality family time together. October 19 Well no news is good news. We have been busy with trying to transition our lives back to some normalcy and are filling in the gaps that have been left open. Abella is doing just fantastic. She started Kindergarten but slowly with only going two days a week to start. She is enjoying it and the children are being so kind to her by showing her around the classroom and explaining the rules. She also started her gymnastics privates for some physical therapy until she can gain enough strength and confidence to join a regular class. She still has a slight weakness from her post surgery bleeding eight months ago and is about 90% back to normal.Go Abella! Her blood counts have continued to rise and she is gaining more strength daily. She is currently on one medicine on the weekend for now and in a few weeks she will begin yet another phase. She will start her oral chemotherapy and take it just before bed every night for at least one year. Hudson has also been doing great. He had a follow up MRI today of the brain and full spine and it was absolutely unchanged from the last one. This stability is great news and gives us the go ahead to begin his clinical trial course once again. His blood counts have continued to drop from the last treatment but they are mildly beginning to climb. We will fly again to New York next Sunday October 28th and will hopefully return to California on November 9th. Abella will be going with us this time and she is so looking forward to the trip. She will also have a consultation with the oncology team at Sloan-Kettering since her tumor tissue also tested and responded to the same radioactive isotope treatment. Hopefully we will never have to pursue that option and her Choioid Plexus tumor will never come back. October 4 Hudson’s treatment in New York went very well and we were pleased how fantastic he did. He is such a trooper for all that he has had to endure and if his blood counts hold up we will repeat the treatment later this month. We arrived back in California and went from one hospital to the next for Abella’s MRI. Her results were good and there was no sign of the tumor we had removed 8 months ago and the tumor in the front continues to be stable. We will be meeting with our doctors to discuss Abella’s next step which most likely will be oral chemotherapy for the next year. She will be starting Kindergarten and gymnastics soon and we are very excited for her to have some normality back. September 28 We had a really busy week between hospital visits and spending some quality time with Hudson in New York. We went to a baseball game, the Central Park Zoo and of course took Hudson shopping at all the fantastic toy stores here. We repeated the CSF flow study on Tuesday to make sure that the test dose would be flowing all around his brain and down his spine. We used a different technique this time and the results of the study were good which gave us the green light to inject the actual treatment dose today. We were very nervous and anxious for today since we have prepared and thought about this treatment for the last few months. As always, Hudson has taken the injection well but he will be radioactive for the next few days which means we will have to keep our distance. He will remain admitted and closely watched for the next 48 hours and we are planning on flying home on Tuesday. Abella's next MRI will be on Wednesday and of course we are anxious for her results as well. September 21 We arrived in New York safely, got settled in and scoped out the upper eastside of Manhatten where the hospital is located. Hudson has had a long week of tests and scans to prepare him for his actual dose given next week. He was admitted for his test dose on Tuesday and stayed in house for a few days until he cleared the small amount of radioactive antibody. He had his shunt tapped five times and had three CT & PET scans to watch how the dose flowed through the brain. Unfortunately we had a setback with his test dose since it didn't move through his brain and remained mostly in his shunt. They need to flush it through the brain more to help it circulate and end up down his spine. We are sad to think that he will need more tests next week before we can give him the actual dose with a large amount of radioactive fluid. We are looking forward to the weekend and having a few days away from the hospital. Hudson is feeling good and has enough energy to play and explore. We have met some other families who also have left their home town to come to NY for treatment. Some from Texas, Iowa, Michigan and West Virginia all putting the needs of their sick child as priority and making difficult sacrifices. We truly miss Abella but we know she is better off at home with family and friends. She would just be shuffeled around and not get to enjoy time away from the hospital. It is also really difficult to be in a hospital which treats only cancer patients. To see so many young, bald children hooked up and enrolled in clinical trials is heart breaking. This week has been long and tiring but we know we need to revamp, collect ourselves and prepare for the week ahead which will be even longer and more draining than the last. September 13 Abella was admitted Sunday afternoon since she spiked a fever and complained of belly pain. So far nothing has grown from her blood cultures which means no major infection occurred. Her immune system has already began to climb and she was released from the hospital today. Congratulations Abella for completing six courses of chemo with so much grace. Hudson's surgery on Tuesday went fine and he was up playing and eating by the afternoon. His MRI on Wednesday was good news and his docs were all pleased with the results. No sign of any new cancer cells and no major bleeding occurred from the surgery. His CSF flow study was performed today and the preliminary results indicated that the fluid is circulating just fine. We will get a final answer tomorrow when he goes back for the last scan. Having both kids admitted at the same time is truly difficult. The hardest part is deciding which child to attend to when they both cry. When we go for a walks on the cancer floor we always get smiles since they are so darn cute. But when other families realize they are brother and sister they just can't believe it and shake their head in disbelief. We anticipated this week to be one of our most difficult and we are glad to be through with it. Between Abella's hospitalization and all of Hudson's tests, we are so pleased with the outcomes of everything. We cannot believe we are flying to New York in three days and are beginning new therapy yet again. We still have a lot to get in order before we leave but we are going with high hopes that this will be the cure for Hudson we have been craving for more than two years! September 9 Abella has officially completed her high dose therapy and we are just so proud of her. She handled her chemotherapy very well and received her own stem cells on Tuesday. Her blood counts have bottomed out now and she is fatigued a lot. She is still nauseous and has a very small appetite but we still hook up her IV at home for 12 hours of maintenance fluids daily. She has needed three transfusions of both blood and platelets the past four days but hopefully by the end of this week her body will start making new cells and give her more strength. We are watching her closely since she could at any time be admitted with a fever since her body cannot fight off even the smallest infection. She is happy to know that her hair will grow back soon and she can start Kindergarten in about a month’s time. We have continued to finalize the details for our New York trip and are feeling more comfortable about the entire situation. We have met with the neurosurgeon to go over our concerns about his shunt revision this Tuesday, the MRI on Wednesday and the CSF Flow study on Thursday. Needless to say we will be at the hospital a lot this week preparing Hudson for his trial which will begin on September 18th. We have decided to have Abella remain at home and close to CHLA. Her body won’t be strong enough to make the trip and she really doesn’t want to spend one extra second at the hospital; no matter what city it is in. She will stay at our house with Grandma and will be occupied with other family members and close friends. All three of us will miss her dearly but we will remain close via phone calls and webcams. We have to focus on Hudson’s new therapy and watch him closely for any side effects. His hospital stay will be tiring for us and we will need some down time when we change shifts. He will not understand the situation since it will be in a new hospital with new doctors and nurses. But thankfully Hudson’s primary doctor will be out there with us in NY for the beginning and should give all of us some comfort. We will be departing in one week from today and will remain in NY for at least two weeks. As our focus shifts daily from one child to the other we will remain dedicated to cure them both of this frustrating and trying disease. August 30 We have been in over our heads with decisions for both of our children. We have decided to go ahead with Abella’s last course of chemotherapy before we begin a new phase with Hudson . Abella will start chemo today since her body is ready and she has passed all the pre-chemo evaluations. It is so great to be at the end of high dose therapy for her but it is also difficult thinking back that we were many times at this stage with Hudson . We are cautious to say “finished” but we are definitely grateful to have reached this point. Hudson has been accepted to participate in a clinical trial at Memorial Sloan Kettering in New York . Hudson ’s trial will inject a radioactive antibody directly into his brain and will kill off all remaining micro cells. He will have two courses of this therapy which means we will be traveling to NY twice. Hudson will need surgery before our trip to change his existing shunt to a programmable one allowing the doctors to turn it off during treatment. Hudson will also have an MRI, PET scan, blood work… before starting. We are still working out all the accommodations, flight arrangements and insurance issues along with deciding whether or not to have Abella come with us or keep her close to home. Although our family is faced with a tremendous amount of stress we are staying focused on the prize; having two healthy children soon. August 20 Abella was released from the hospital last week and has recovered quicker than we all expected. Her body’s immune system is so strong and fought off the infection within days of being admitted. She has needed some blood and platelet transfusions but overall she is feeling good. Hudson has completed his radiation and chemotherapy! We are just so happy for him to finally finish this difficult therapy and marveled at his charisma and strength. He is really enjoying his mornings now by getting to sleep in late, eat breakfast, watch cartoons and play with his toys. It truly is the simple pleasures in life that give us All joy but it is also difficult to know that these privileges are what a normal child’s life should have. We are now focused on the next course of treatment for Hudson . We have been exploring for months the possibility of putting him on a clinical trial which is specific to his rare tumor. After his last brain tumor was resected in June his doctor sent tumor tissue to New York for a trial and his cancer cells responded strongly to this therapy. If we do pursue this treatment it would be in mid September and our family would have to travel to NY short term. This is a very big decision for us but it seems to be our best option. We know that a low dose therapy is just too risky and this very aggressive cancer could return for a fourth time. It has been weighing heavily on our minds recently and this week we are meeting with the team of doctors and the surgeon to go over all aspects of treatment. From the beginning we have promised our children to give them the absolute best possible chance to beat this awful disease even if this takes us to New York . August 12 We have come off another long and tiring week with both kids having such complicated therapies that require so much focus. Abella received her own stem cells to help her bone marrow recover and she faired fine with the infusion. She was less nauseous, slept okay and still had energy during the day for the usual crafts. We all agree that she overall handled this course better than the last and for that we are thankful. However, Abella was admitted to the hospital last Thursday morning due to a spiked fever and increased throwing up. She was in a lot of pain due to typhlitis (or inflammation of the bowel) and needed to be closely monitored. She was given an X-ray of her abdomen to look for any blockage which could have been severe. She was given morphine and Tylenol every four hours which really takes the edge off the pain and calmed her fever. Her dose is so small that it doesn't knock her out or cause her to hallucinate; it just takes away the pain. Abella was put on two broad spectrum antibiotics and an anti fungal to hopefully take care of it. We are waiting on her blood counts to recover so she can heal and fight the infection. She was hospitalized only one day before her 5th birthday and we were so sad for her. But we did our best to bring her celebration to the hospital. We reserved the Conference room for a special Fairy Princess to come and take her mind off the situation. The nurses all came in and sang to her and she pretended to blow out the candles since we weren't allowed to light them. Just being out of the room was good for her and us. Hudson only has four days left of Radiation and chemo which went almost seven weeks long. Both kids needed blood transfusions this week and it feels so strange to see them hooked up and needing therapy side by side. I don't think we will ever feel comfortable seeing them both endure such aggressive treatment. Hopefully Abella will be discharged by mid week and we can all catch up on some rest and make up for some long awaited family time. July 30 Abella began her fifth round of chemotherapy today and is doing well tonight. She is an outpatient for the first time during treatment which means more focus to detail for us. She is receiving a type of chemo which can burn her skin if excreted through the pores. She cannot be in the sun, have any tape on her skin and needs multiple baths through the day until she clears this from her system. She will have one more day of chemo and will receive her stem cells on Friday to help her marrow recover. Hudson has now reached the half way point for his daily radiation therapy and chemotherapy. He had a great weekend at home and is eating and sleeping very well now. His spirits have lifted and is usually in a great mood. We are thankful for this change and for his own well being. Since Abella's treatment was pushed back our family took the opportunity last week and went to Disneyland for a few hours. This was Abella's birthday request and since her body won't be recovered by her birthday, August 10th, we decided to give her an early gift. She is truly a daredevil only wanting to go on Space Mountain, the Materhorn or any other fast roller coaster. We all needed this opportunity to laugh and enjoy ourselves since the next few weeks will be spent mostly at the hospital. July 13 We have all been very busy and are still juggling things everyday. The team of doctors has decided to postpone the start of Abella’s fifth round of chemo since her body still hasn’t fully recovered from her last round. They are afraid that if they hit her marrow with chemo again she could have an extended hospital stay. We all agree that waiting it out is better for Abella’s body. She has been such a help with her brother this week by helping him and always including him in her special play dates. Hudson has not been feeling well and has let everyone know it. He is tired a lot and is not getting enough sleep each day. He is not eating much so his energy is low. And he is just struggling with the fact that he feels punky all the time. We are doing our best to just grin and bear it but to say the least it has not been easy recently. The weekends come around and we do seem to catch up on some rest and nutrition. We are thankful to have two days off a week to recuperate. July 6 To say the least our family has come off a long and tiring week. As we all adjust to the new schedule and daily commute to LA we are beginning to realize what we are headed for. This week we juggled radiation therapy, chemotherapy, clinic appointments, lab work and transfusions between the two kids. This last round of chemo was very difficult for Abella’s body to recover from. Her blood counts are still sluggish and her body has needed transfusions. She should be on her way up since we are three weeks out of chemo and hopefully she will get to have some fun before starting again. Hudson is not too happy about his daily sedations and has had a difficult week as he also remembers this difficult treatment. His blood counts are now dropping from the chemo and he has also needed a blood transfusion. He is tired a lot but also happy to be able to come home and sleep in his own bed. We are accepting this situation but we are frustrated for our children who can’t understand why we have to keep going back again and again. An answer for them is beyond all our imagination and we can’t change what we have been given. We get through each day trying to stay positive and with our spirits lifted. We are the example our children follow and we will lead this fight with an iron fist. June 25 Thankfully, Abella and Hudson were both released from the hospital on the same day last week. We had a few busy days together with lots of medicines due throughout the days and nights. Abella's blood counts still have not picked up yet and she had to be readmitted on Sunday since she spiked a fever. She is not feeling well and is scared to eat since she is still battling nausea and cramping. Hudson started his chemo today as an outpatient and handled it well. We are truly sad for him as he begins therapy yet again and we know it will be very aggressive. He will be given chemo and radiation simultaneously which will be very tiring for him. Hudson will have his radiation planning phase this week and will be fitted again for a new bite block, head rest and have scans to map out his treatment. June 18 Abella received her first stem cell transplant today following two days of chemo. She has handled the chemo with some bouts of nausea but overall is doing fine. We were all nervous for her transplant but she is resting just fine tonight. The chemo has already hit her blood counts hard and she will need some transfusions this week. Hudson is amazing! He is already walking around the floor giving hugs and flirting with the nurses. His second surgery was only five days ago and he has handled it like a champ! He is set to start his new chemotherapy next Monday followed by 6 weeks of localized radiation treatment. For now we are taking day by day and will hopefully be sent home soon to rest and recover before starting the next phase again. June 14 We finally had some encouraging MRI results. The surgeon was able to completely remove the remaining tumor. Hudson's recovery from his surgeries are astonishing and he is already playing and has an appetiet for "pizza"! Since Abella got admitted for her chemo today, our entire family is sharing now a room on the solid tumor floor. We are calling it the "Wyss residence at CHLA" since we will be spending the next week together here. June 13 Hudson's surgery lasted 2 1/2 hours today and is believed to be a success. The surgeon removed the small tumor and some of the lining around it. Hudson is having a lot of swelling but is talking and sitting up watching his videos. We are hoping the follow up MRI will be a clean scan! He truly is a fighter and has the entire hospital wrapped around his finger! Tomorrow Abella will be starting her strongest round of chemo yet. We will trade off our time between the ICU and the solid tumor floor to spend equal time with Abella and Hudson. June 12 Hudson's follow up MRI came with unfortunate results. There is a 1cm tumor that was seperate from the mass that was removed yesterday. The surgeon was unable to see the tumor because it was surronded by normal brain. Hudson will have surgery tomorrow at noon to hopefully remove it all. It is in the same location and surgery site as before which should make the procedure go smoothly. June 11 Hudson had a long, four hour successful surgery. The surgeon removed all visable tumor and was pleased with the procedure. Hudson also had a central line placed for upcoming treatment. We are content with the outcome of the surgery and are hopeful for his continued improvement. Hudson will recover in the PICU for the next few days. June 8 With great sadness we have to inform you that Hudson's MRI results today showed a 5cm tumor in a new location in his brain . We are scheduled to have brain surgery first thing on Monday morning to remove it. We will postpone the start of Abella's 4th round of chemo for a couple of days. We will find a way to balance this new challenge and continue to give both of our children our best. June 6 Abella’s MRI went fine and the results were good, stability. Her blood counts have almost fully recovered and she is so full of energy. She is still scheduled to start chemo on June 11th and will get her stem cell rescue on the 15th. However, Hudson is still having some stomach trouble. He is still irritable, eating very little, and sleeps a lot. We are trying to push up his MRI to the end of this week to see what the problem is. Hopefully we can determine the cause or change the current medicines he is on. Most signs point to his abdomen instead of his brain, but we will hopefully find out soon and have some assuring results. June 2 Our family has come through a long and difficult week. Hudson has been having some stomach issues (possibly nausea or cramping) with his bio-medicine and has worried us a lot. We are trying to determine if this is from the medicine itself or something else. We are changing a few things to see if anything helps and have added another medicine. Abella needed three transfusions and is still extremely bruised up from her low platelets. But she is in great spirits and did get to have some fun this week. Since her immune system is so strong right now we took the opportunity to visit a family’s private zoo in OC. Abella’s favorites were the baby giraffe, the swans and riding on the giant turtles. Animals are such a source of joy for her and it truly was touching to see her so happy. Abella will have a brain MRI on June 4th and will start her first stem cell transplant cycle on June 11th. May 20 Abella was admitted for her third round of chemotherapy and came out after just four days. She did just fantastic and came home energized and eating. She had a very special visit one afternoon from Princess Cinderella and one of Abella’s close friends. All three were dressed to a T and read stories, sang songs, and even got their faces painted. That afternoon was just perfect and ever so magical. Our little Abella has adjusted so well to the hospital stays and now tells the Docs all by herself how her night was, how she is feeling and that she wants some medicine when her tummy hurts. She has grown up and matured so much in the last three months it is surprising. We all are adjusting to this new phase in our lives and have realized to take advantage of the times when she is strong and eager. In the past few weeks our family has done things that we have wanted to do for some time now. We went for a morning beach walk to collect shells, we took a day trip to a theme park, and Abella even had a private gymnastics session with her former coach. We are learning to make each day special in some small, or big, way and to not let life pass us by. The week ahead will be rough but we are anticipating her body to have low blood counts, fatigue, and needing transfusions. May 4 Today our family spent the day down at Sea World in San Diego. It was so special to see both the kids so excited and connecting with all the animals. Holding starfish, feeding seals and seeing Shamu splash the audience were just some of the highlights. This was the first time either of the kids had been there and it truly was memorable. On Thursday, a reporter from CBS/KCAL came over to interview our family about our story. We were touched when they contacted us and showed interest in our drive to cure our children and raise awareness. The link to watch the clip is http://www.cbs2.com/video/?id=38794@kcbs.dayport.com May 1 Abella has been doing fantastic! She managed to stay out of the hospital this course, so far, and her blood counts are on their way up. We are back home again in OC and are planning a few fun day trips before we start again in two weeks. Hudson is probably the most excited from all of us and is so eager to play with his toys, his boat bed and his soccer goal in the backyard. On April 28th The Gifts of Love community garage sale was so amazing and went way beyond everyone’s expectations. The community’s moral and financial support for our family was so kind and heartfelt. So many people who our family didn’t even know came out and volunteered their time and effort to make this event possible. To say the least, we are so grateful for the outreach and love shown for both of our children! On May 7th the Pediatric Cancer Research Foundation has their 9th Annual Reaching for the Cure run/walk held in Irvine. Hope for Hudson & Abella is our new team name this year and will, as always, be a fantastic event. If you would like to register you can at: http://www.pcrf-kids.com/run/walk/index.html April 19 Abella was released from the hospital today after being admitted for four days receiving her second round of chemo. We are expecting her blood counts to drop once again next week and she will probably have to spend a few more days as an inpatient. Her spirits are up and she is really proud of herself for how well she did with this course. Our family has been touched by the local community who has wrapped their arms around us wanting to raise awareness and funds. An article was written in the local OC Register recently about our family: http://www.ocregister.com/ocregister/homepage/abox/article_1654397.php April 5 Abella has completed her stem cell collection today and has put out an enormous amount of cells. Her body has given enough cells for multiple transplants but for now she is scheduled for three to come in a few months. To say the least, her body is tired from the long days in the hospital, daily shots, meds and multiple transfusions. The most difficult challenge we faced this week was when her princess hair began to fall out. At first it was just a little so we cut it short. But soon after it really got annoying and in her way so we decided it was now time to shaved it all off. She still has a hard time looking in the mirror and tells us she "didn’t want this to happen". We have talked about it a lot and have read a few books about other children who have lost their hair and now get to wear fun hats. To help her through this Abella got to shave daddy’s head so they will be twins! She was discharged today since her body has mostly recovered from her first treatment and will hopefully get to stay home (in OC) for Easter. In different ways, it is exciting for each one of us to be home until she will start her next round April 16. March 31 Abella has been doing well at home until yesterday when she had to be admitted into the hospital due to a high fever and extremely low white blood counts. She is receiving a shot in her leg daily to help boost her immune system. She is mad that she has to get it and let's the enitre neighborhood know! Hudson was really enjoying having Abella home for a couple of days. He would wake up from his mid-day nap and call out "Abella" and run to her for a big hug. Hudson likes going to the park daily and works on his soccer skills with daddy. Depending on her recovery we are gearing up for Abella's stem cell collection over 3 days late next week. March 22 Abella has handled her first chemo cycle better than expected. She only had one night with extreme nausea but it is under control now. Abella has spent the last 4 days in the hospital resting, coloring and playing games. Today we were able to go to our apartment in Los Angeles where we will have to watch her closely. The biggest challenge we are facing with her, besides losing her princess hair, is explaining to her that this will go on for the next 6 months. Hudson is adjusting just fine and has recently begun his preventative treatment medicine. His neuro evaluation was normal and he is enjoying coming to the hospital as a "visitor" and not as a "patient"! March 14 Today’s results were great on all ends. First off, Hudson’s MRI of the Brain and Spine were fantastic with no new spots and more shrinkage of the existing tumors. We feel confident that Hudson will continue to thrive while his sister is beginning her treatment. Abella’s kidney scan and hearing evaluation were both perfect and she is now cleared to begin her six month course of chemotherapy. She will start treatment on Monday for a four day admit and a stem cell collection in three weeks for her transplants. We are so grateful she will get another weekend at home to recover and work on building strength in her leg and arm. To go from complete paralysis of the right side to walking on her own in just one week shows her eagerness to overcome this. We are thankful for such a positive day and are optimistic about the coming months. March 8 Abella has made tremendous strides yesterday by her ability to move her arm and leg. She came out of the woodwork and has given her best effort for recovery. Today she can sit up without support, wave her hand and stand with some weight on both legs. She has amazed us all by her continued progress and will get to come home later today. She will need physical therapy daily for the next month or so to strengthen her motor skills. We are so in awe of the strength she has shown during such frustrating and trying times. To come home so soon after having brain surgery and post surgery complications shows us she is ready and up for the fight. She understands now what will happen in the next few months and has been asking a lot of questions. No parent can ever really answer the question of 'why' this has happened to their own child but we can stay positive and do our best to downplay this traumatic experience. Our family togetherness will be special this week, especially for Hudson who constantly asks 'where’d Abella go'? And Abella will have a chance to recharge at home for a week before we begin high-dose chemotherapy. March 4 Abella has been moved out of ICU and up to the surgery recovery floor. She has regained some strength in her arm and leg. The Neuro-surgeons expect her to make a full recovery with some physical therapy. Abella has been sitting up, eating complete meals and is often asking when she can come home. The final pathology came back and as expected the tumor removed is a CPC. Her chemotherapy won't begin for a few weeks so Abella will have some time to rest and recover. Hudson is doing great and is adjusting to the change in family life. This week he will have a 4 hour Neuro-Psych evalution to assure he is meeting all the childhood developmental milestones. Please continue to keep Hudson in your prayers as he also has a MRI in 10 days. March 2 Abella has had a little setback in her recovery from surgery. After being released from the Itensive Care Unit (ICU) on Wednesday night she had to be moved back to the ICU due to lack of feeling on her right side of the body. The CT scan showed some post operative swelling and bleeding in her brain which has caused this hopefully just temporary loss of feeling in her right arm and leg. The doctors will be watching her closely over the next few days where we are optimistic to see some progress in her movement and spirit. February 27 Abella came through the operation with flying colors! The tumor was removed with a complete resection and she is now in recovery. The next step is to analyze the type of tumor and determine the appropriate chemotherapy. Thank you all for your thoughts and prayers. February 25 We have gotten through this week with the support and encouragement everyone has so generously given. The weeks and months ahead seem uncertain with many highs and lows but our family has been accustomed to that lately. As many of you know, Abella's stubborn personality will carry her through this because she too is tough as nails and more competitive than her Daddy! She will follow in Hudson's footsteps and show us her own fighter spirit. Hudson is the bravest person we know and has conquered every circumstance he has faced. He has never allowed the shortcomings of life beat him and we are convinced our sweet Abella will do just the same. Abella's surgery is scheduled for the morning of Tuesday, February 27 and until then we will continue to try and make the most of our situation. Thank you for your prayers. February 16 This update comes as a surprise as our lives have again been turned upside down. Hudson is doing so fantastic but his older sister, Abella age 4, is about to travel a similar path that Hudson has faced. When Hudson's tumor recurred last April his Neuro-Oncologist suggested we test him for the cancer gene, called the p53, which is associated with his type of tumor. Hudson's results came back positive for the gene so we decided to test ourselves and Abella. Unfortunately Abella's results came back positive as well and we only recently started actively screening her with a physical, blood work and a brain MRI. Today as our worst fears have come true both of Abella's MRI's have shown there is not only one but two small brain tumors. We have been told that one is a Choroid Plexus Carcinoma (same as Hudson's) and another small lesion called a Low Grade Glioma. The rarity of the CPC is less than a dozen cases yearly and she will need a craniotomy (brain surgery) to remove that one. The other small tumor we will use chemotherapy to combat. There are no words to describe how devastated we feel as parents to now have two children who fight cancerous brain tumors. As all of you have followed Hudson's long journey to stability, we are only at the beginning stages for Abella. We are scheduled to meet with the Neuro Surgeon at CHLA on Monday to plan a day for surgery and have many questions answered We anticipate post surgery chemotherapies to treat both tumors and will learn more about her protocol in the coming week. As for now Abella has no symptoms, complaints or developmental delays. She is a happy, healthy four year old who loves school, her gymnastics, and "every animal in the world." The emotion that goes into dealing with such a traumatic future for a four year old is heart breaking. We will do our best to tell Abella what to expect next week with the example of Hudson, books and involving the Child Life specialists at CHLA. If you could please pray for both Abella and Hudson who have been given a childhood no one should ever have. And please keep us in your thoughts as we battle to understand the meaning behind all of this. The road ahead is confusing, frustrating, and unimaginable but we promise to give our two children the best possible life we can give. Thank you for your love and support that always keeps us encouraged. January 16 We are so excited to share with you Hudson’s MRI results from today. For the first time since May of last year, we had actual shrinkage of the tumor Hudson has battled. Also there is no sign of any new growth in the brain or spine which is so important especially since he has been off chemo and radiation theraphy for some time. A huge burden has been lifted from our shoulders and we are so thrilled for our Hudson that he will be given the chance to enjoy a healthier life. Hudson will have his central line removed, begin a new bio medicine for prevention and is scheduled for another MRI in eight weeks. In the meantime we are looking forward to seeing him smile and play at home with his best friend & sister Abella. 2006 December 5 Hudson has completed his radiation therapy treatment. We are just so relieved this phase has ended because the past seven weeks have not been easy for our family. He has grown up a lot recently and wants to be Mr. Independent by making his own decisions! He is happy and is enjoying some well deserved down time of rest and recovery. Hudson won’t start his new preventetive bio-medicine until after his next MRI on January 15th. Until then we are looking forward to some family togetherness at home which we have missed out on. Please pray that this was the final phase in Hudson’s treatment and that he will be cured of his cancer that he has battled for the past 16 months. Our family would like to wish all of you a very special Holiday season and we are grateful for all of your ongoing support! October 25 Hudson has finished his first week of radiation and we are so impressed by how well he has handled it. He is energized most afternoons and his spirits are up. He did have some nausea & vomiting over the weekend so by Monday he was put on a steroid to reduce the inflammation in his brain. He is feeling much better now and the vomiting has stopped. As you can see in the photo his hair is starting to grow back, again, and he is growing & maturing everyday. I think Mom & Dad are more tired and worn out than our little man from the daily commute. But it is such a reward to come home and see him running around filled with vitality. Hudson was asked this year to participate in the Pediatric Cancer Research Foundation’s Holiday Card Program. His card is titled "Baby Steps" and his foot steps have been scanned in as they walk across a rainbow. Hudson is the youngest artist to participate in the 20 year program but we hope his tiny toes will inspire many. If you are interested in purchasing a box of Hudson’s cards or an ornament you can go directly to PCRF’s website http://pcrf.stores.yahoo.net/reindeerneeded.html Hudson is truly an inspiration to us and this new treatment has been a test of his courage to fight such a challenging battle. He has proven to be lion-hearted by showing us daily just how brave he is. Please keep him in your prayers that his endurance will continue. October 15 Well after a difficult decision on where and what type of radiation to choose for Hudson we have finally reached our decision. Hudson will be treated at Children’s Hospital of Los Angeles with IMRT or Intensity-Modulated Radiation Therapy. This is an advanced mode of high-precision radiotherapy that utilizes computer-controlled x-ray accelerators to deliver precise radiation doses to specific areas. It is designed to conform to the 3-D shape of the tumor by modulating the intensity of the radiation beam to focus a higher dose to the tumor while minimizing exposure to surrounding normal tissues. Basically this means that a much more effective dose can safely be delivered to the tumors with fewer side effects compared with conventional radiotherapy techniques. Hudson’s radiation oncologist is one of only two full time pediatric radiologists in the country and we are convinced that Hudson will be receiving the best possible care. Having been through so much already, we have realized that one of the most important choices for us to make is to ensure patient care. The individualized course of treatment is critical and we are certain that the team including a radiation oncologist, physicist, anesthesiologist, therapist, and nurses truly care about our sons well being. They have taken their time to work out the specific dosage and duration for his IMRT and we will start this Monday for 31 sessions or about six weeks. Hudson has already done his simulation session or pretreatment testing for his immobilization device (headrest and mouth guard) as well as a CT scan and a few X-rays. These are all done to make sure all the measurements line up correctly each time he is placed on the "couch"; too bad it’s not what it sounds like J All in all, we truly are so blessed to have such jovial children who love and care for each other abundantly. Please continue to keep our family in your prayers that we will remain strong and close through this new phase. Thank you, once again, for your ongoing love and encouragement amidst such rough waters. September 27 Hudson has completed his second stem cell transplant and it was by far his most toxic cycle. His blood counts are still sluggish after 4 weeks and he is just finally showing signs of recovery. Today, he had an MRI which showed again the same stability as we have seen for the last few months. After contemplating all options with our doctors we have decided that a third cycle of chemotherapy with a stem cell rescue would not be in Hudson’s best interest. The chemotherapy has given us 5 months of stability but to ultimately cure Hudson of his residual tumors we have to move forward. Hudson’s tumor (Choroid Plexus Carcinoma) is known to respond to localized radiation therapy and we have decided to take this step. This is truly a difficult decision for us but we are convinced that this will maximize his chances for longtime cure and survival. There are many important details that still need to be worked out including type of radiation, choosing the right specialist and hospital. We have already started the process of obtaining medical advice through consultations specific to Hudson’s case from LA to Boston to Switzerland! The average pediatric radiation treatment lasts 6 - 8 weeks, 5 days a week which will be done as an outpatient. Please keep our family in your prayers as Hudson’s treatment will begin within the next few weeks. August 22 Hudson's MRI showed that his tumors are "rock solid stable" which for 4 months in a row is a good result! Hudson's is coming off one of his best weeks ever, participating each day at the Soccer For Hope camp and running around with full energy! We are adding a third chemo to his regiment which we will be starting tomorrow again. He is scheduled to receive his stem cell transplant on Monday as this will be his hardest cycle yet. The Medical Team at CHLA is delighted with his MRI results which gives us great comfort in moving forward! Please keep him in your prayers as he receives and recovers from this month's chemo cycle. July 17 Hudson’s MRI results are the same as last month which means the tumors are stable. Honestly, we were hoping for some shrinkage but stable with his kind of tumor is always a good result Hudson has done well this last month and he keeps taking on his daily challenges with a big smile! We are moving forward next week with an additional chemo therapy which is very damaging to his bone marrow but has shown great results in the past with brain tumors. He will be receiving his own stem cells to rescue his bone marrow for the next 2 or 3 chemo cycles. We are hopeful that our next MRI in August will show continued progress in our goal to cure Hudson! Thank you for thinking of our family and for keeping us in your prayers. June 11 Hudson's MRI results on Thursday showed that his tumors are stable, which is a good result and a step in the right direction. His current chemo protocol is responding and we are hopeful that with an increased dosage of the same chemo this next month we should see the tumors shrinking. Our family is very encouraged by today's news and gained new strength for the upcoming months of treatment. The plan is to harvest his stem cells this next cycle and use them for a tandem bone marrow transplant to complete his treatments. Hudson has recovered remarkably well from his last chemo and he is walking, talking and progressing daily to all of our amazement. Thank you all for your love and encouragement! May 14 We apologize for the delay of an official Hudson update but we have temporarily moved to Hollywood to be closer to the Children’s Hospital. Unfortunately this week’s MRI results were not what we expected and his current tumor has progressed and there are also two small new spots. This changes the course of treatment and Hudson will be starting a new chemo regimen this Tuesday. He continues to recover from the last round and is finding joy being out of the hospital for a few days. Hudson is trying to walk again and his little laughs are priceless which give us continued strength to move ahead! Thank you once again to all of you for your endless support; it is truly special to our family! April 16 Hudson had brain surgery to remove a large 4cm tumor but unfortunately there was a second smaller tumor which the surgeons were not able to get to without risking severe brain damage. Yesterday, Hudson had surgery to install a shunt (to help channel the brain fluid), a new central line for chemo therapy and a spinal tap. Hudson is recovering well from his surgeries and we are encouraged by his progress so far. Starting this Wednesday, Hudson will have to undergo a very aggressive chemo regimen to rid his brain of the remaining tumor. Depending on the response to the treatment he will continue with future cycles. Due to the fact that Hudson’s tumor and recurrence location are so rare there is not a standard chemo protocol for choroid plexus carcinoma tumors. We completely trust Dr. Finlay’s new approach to treat Hudson and bring him into remission once again. It is a very difficult time for our family and we are very appreciative of all of your continued support. Hudson is 19 months old and he shows all of us the definition of courage every day! April 6 With great sadness and disbelieve we have to inform you that Hudson’s tumor has come back. We brought Hudson to the see his doctor today due to him having trouble with his balance and coordination. The results of his CT Scan showed that the tumor has grown back to the same size but is now at a different location. He is scheduled for an MRI tomorrow morning and to have brain surgery to remove the tumor in the afternoon. We all are in shock but wanted to inform you to please keep Hudson and our family in your prayers! |
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