Cecilia is a two-year-old who was diagnosed with acute lymphoblastic leukemia at 13 months of age in 2016. Her diagnosis came after she began to bruise easily and had trouble walking. Blood work revealed that she had cancer cells in her blood. Cecilia started treatment as soon as she was diagnosed and is currently going through her last phase of treatment. Cecilia will have her port removed in May of 2018! Cecilia’s treatment currently includes a daily dose of chemo, a second chemo on Friday, a visit to the clinic once a month, a round of steroids once a month and a spinal tap every three months. Through all of her treatment, Cecilia continues to thrive as a happy toddler!
Derek was diagnosed at the age of 1. When he was diagnosed none of the doctors were familiar with desmoid fibramotosis. He was the 4th child diagnosed. We decided to take matters into our own hands and reach out to St Jude’s where they were just starting to research it. He was approved to go to St Jude’ but we did not want to leave our family for 2 years during this time. We had his mediport put in and he started chemo that same day here at Children’s Hospital. We were so fortunate to get to work with Dr Brian Greffe. Derek was in treatment for 2 1/2 years, and had many surgeries. He still has regular MRIs to watch the tumor. Derek was chosen to have his story shared with millions with the Desmoid Tumor Research Foundation. He is the most resilient person I have ever met. Nothing can get him down.
In March 2017, after Ali had been complaining of pain in her knee, we thought she was having growing pains or maybe a small injury. After x-rays and an MRI we got the diagnosis of Osteosarcoma. She has been in treatment at Children’s Hospital since March and underwent surgery in June to remove the cancerous tumor and replace the knee and bone. She has kept a positive attitude and always has a smile for everyone.
Diagnosed 6.13.16 the day after we dropped her sister off for camp. Isabella is the one who pushed us to talk to the doctor because, “Taylor doesn’t look right. You need to take her to the Doctor!” That was the first step of our journey.
One year later, with the help of the amazing people around us and the grace of God, we are stronger, wiser and on the road to recovery.
We moved from Idaho to Pueblo and shortly after our move in Nov. 2016 our lives changed forever when our baby was diagnosed with cancer. Our struggles have been great and our family has suffered. I think this party could really bring some happiness to my kids they mean the world to me…the only time I feel happy is seeing them smile.
Braden is 8 yrs old:) He is the most Loving, caring, giving, sweet kiddo! He has been so strong through all of this his/our journey! We are finishing up treatment after a very long 3.5 yrs! He always took each appt – Hospital visit- very long 10 day isolation stays with a smile! He has a compromised immune system from treatments and gets monthly IVIG Transfusions! In the beginning we went to the doctors the hospital 4 times – Memorial Hospital actually told me my son was lying about the leg pain! He always wanted to play so he would actually say nothing was ever wrong! So I knew when he complained of the leg pain it must be pretty bad! I brought him in many times! Not once did anyone take Blood! I am very happy finally- Dr Rapper at the emergency clinic in falcon is the one to finally request! I was in Jamaica (on down season) first trip without them- to celebrate our anniversary (we went as a group friends adults only) it was 1000 for air food and drinks do cheap couldn’t pass up! It was the worst decision ever! As the worst news you want to ever hear and I was so far away! I couldn’t walk run drive swim nothing to get home to my baby! It was off season so no flights till the next day and at that took the longest to get to Colorado! I have felt so guilty! I couldn’t imagine how he felt or what he was thinking at that moment- I am afraid to ask! To this day! So I have not missed anything we have been together since! I don’t go anywhere or do anything! I want to be right by his side in case he needs me! I never before did anything either I knew my relationship needed it with my husband my children’s dad! We were always together!
He could not go to school so we have homeschooled and now at Falcon Virtual- they are truly amazing!! Started with Jodi Fletcher and now his Classroom Teacher is Britney! They now are so supportive encouraging! He will start going to school 2 days a week soon!
He is amazing at math! Loves nerf guns and RC cars! We love to go camping and Four Wheeling! He has always been the one to befriend someone in need or different! He will always be so kind and loving!! Give a helping hand! We as a family always have been givers! Never received! The nurses are amazing – I would not of made it without Braden or them! So thankful! Groups like these are amazing!
We have been in a bubble for 3.5 yrs! I don’t really know what to do now!
We started out in 2017 just after Greyson’s kindergarten Valentines party – his eyes turned yellow. He rapidly developed acute liver failure on the spectrum of HLH – but no infection or genetic cause was ever found to blame. They saved his liver but as it healed his bone marrow slowly began to fail throughout 2017. No one in the family was a match, but they found an unrelated bone marrow donor in Poland. Greyson received a hematopoietic stem cell transplant on March 30th, 2018 (Good Friday) here at children’s hospital Colorado. So far we are 70+ days post transplant and by all reports he is doing excellent and hoping to return to school next year!
Anise’ was diagnosed in 2004 with ALL and became a Children’s Hospital Ambassador, rode the Courage Classic, was a part of YAPS and numerous other cancer organizations. She was a loving and feisty ginger that touched everyone she met. She had a great impact in the short amount of years that she was on this earth.
Mara, by rights, is a miracle wrapped up in a thirteen year old beautiful little girl. When Dawn and Rob Dawkins were preparing for the arrival of their 28 week old baby girl, some tests came back and they were told by doctors that she was extremely small and would have a 1% chance of survival. They were given the option of abortion. Dawn and Rob decided to give God the decision of life or death, regardless of how hard it would be to get through the next 12 weeks knowing their child would die at birth, or soon afterward. Thirteen years have passed and Mara is still with us. Her first five years were unlike a typical child’s. She was not expected to walk or talk, and while she had some difficulty doing both she overcame the odds. She now talks up a storm and loves to run and jump and play just like any other thirteen year old.
When she turned five, Mara was diagnosed with Hirschsprungs disease which is a lack of nerve development in the large intestine causing improper muscle movement in the bowel. As a result, she had a bowel resection and pull through; a blessing at the time as she had dealt with constipation issues continually since birth. However a year after the surgery, she began having issues with diarrhea and infections in her lower intestine. During this time doctors finally determined the type of dwarfism she had was Cartilage Hair Hypoplasia, a rare form of dwarfism know to cause abnormal immune system function. Affected individuals with severe immune deficiency can develop life-threatening infections. During 2010 and 2011, Mara had multiple hospitalizations due to chronic diarrhea, due to her low immune system, infections and Hirschsprungs. In 2011 the SCID’s or immunodeficiency became severe enough to require a Bone Marrow Transplant to save her life.
On December 5th 2011, Mara began the preparation process for the Bone Marrow Transplant which involved completely killing her natural immune system with chemotherapy, prior to having new donated bone marrow transplanted. December 19th is now her birthday and transplant day.
Mara is now 4 and 1/2 years out from BMT and doing great!.
Our son, Kallum, was diagnosed with leukemia in 2014 when he was just two and a half years old. He spent much of that first year in hospital receiving treatments and recovering from fevers. He has undergone a lung biopsy and had to struggle through a blood clot in his brain due to the chemo that he was receiving. Shortly after his diagnosis my husband was fired from his job and for the next two years we struggled financially on top of our emotional turmoil. Kallum has faced everyday with bravery and courage and we are glad to say that he is in remission and his treatment end date is May 28th 2017. We are just now working to get our lives back to where they were before diagnosis, and while it is a long hard road that we have faced we have stayed together and fought back and now we have nearly won!!
Things began on 12/10 and Isabelle was complaining of headaches. Initially we thought she was dealing with a sinus infection or something else that was just causing her to feel a little under the weather. She seemed to feel a little better and then the headaches would start back up. She was in good spirits but the headaches were certainly taking a toll because she would get tired so she was sleeping more than normal. We went skiing on Sunday the 14th, this was the first time that the kids have ever skied. It was great day and the kids had a blast. Isabelle did start to complain of the headache on the way home so we thought it was time to take her in to see what was going on. We went to Children’s Hospital (south campus) to get her checked out. She was not presenting with any sort of infection (no flu, no sinus infection, no fever or strep), they concluded that she probably has a viral infection so obviously my mind started to wonder what was going on, to be honest I did think there was a greater concern over just a simple viral infection. We had a brain MRI planned for the following Thursday as a precaution because we have recently learned that Isabelle does have a genetic mutation that warrants close observations. So we did what we could to keep her headaches at bay until we could get more answers from the brain MRI. We nervously waited over the next few days for the MRI to tell us more as to what was causing the headaches. Thursday was upon us and we started the day just like every other day. Struggling to get the kids out of bed and out the door! We went to Children’s Hospital for the brain MRI and ultrasounds. The ultrasounds went well and nothing of concern there. We prepared for the brain MRI and Isabelle decided to go with a pink lighting for the MRI room, that little girl loves pink…no surprise there! Things were going as planned and toward the end of the imaging Sarah noticed that the technician was on the phone with someone. This obviously prompted a little worry from Sarah given her recent treatment for breast cancer…..motherly instinct that something concerning was going on! They promptly escorted Sarah and Isabelle to another waiting room and indicated that a radiologist needed to look at the image. That is not good! Sarah quickly called me since I was in the waiting room with Michael and said I needed to get back there ASAP! So I nearly kicked down the door trying to get back there, once I made it to Sarah the radiologist informed me that my baby girl had a tumor in her mid-brain. Instantly I couldn’t believe we were going through this again and now with my little girl. I tried to maintain my composure and allow the radiologist to explain what was going on and how this tumor was impacting the flow of her cerebral fluid and blocking the fluid to drain into the 4th ventricle. I felt like I was punched in the stomach yet again…..I was angry, upset, sad, frustrated all at the same time! Start asking why Lord are we going through this yet again??
The doctor could not say with absolute certainty that the tumor was a malignancy or benign so a biopsy would have to be performed to better understand what we are dealing with and additionally they would have to deal with the blockage. So the doctors would have to perform an Endoscopic Third Ventriculostomy (ETV) which in laymen’s terms is a procedure to allow the cerebral fluid to properly drain into the 4th ventricle. This would relieve the pressure buildup (hydrocephalus) that was taking place in her brain. The doctor said it’s a pretty standard procedure and if successful Isabelle would not need shunt. So we were optimistic that this would address the tumor blocking the canal. She would also need a biopsy of the tumor so that added some complexity due to location of the tumor. They would need to access that through the back right side of her head going through her cerebellum. Now let me tell you when neurosurgeon explain this stuff everything seems simple and routine. They have an amazing talent of calming your concerns…..so bless them for this ability to take brain surgery and make it seem normal. These doctors are truly amazing surgeons. The plan was the needle biopsy and (ETV) and possibly one or two night stay in the hospital. Surgery was planned for Friday at 5:30pm so we nervously waited in the hospital for surgery time. Isabelle as in good spirits and enjoying her time in the hospital with the attention she was getting but not happy that should couldn’t eat all day….yeah that kind of pissed her off. Let me tell you what they are many people out there that love us and love Isabelle….so many calls, gifts, stuffed animals, blankets, etc came flooding our way! So the surgery time came and it was planned for 3 in half hours give or take. I can tell you by this point Sarah and I were completely depleted emotionally, physically, and spiritually. In looking back….I wish that I was stronger when they rolled her back for surgery but I just broke down and cried from all the heartache and pain I was feeling! I was so scared for my daughter and that she was having to go through this…..as a parent you want to protect your children from anything bad that can happen! I truly felt completely powerless and for the first time there was nothing I could do to protect her or keep her safe….that hurt more than I can even express! She was in God’s hands and all I could do is keep my faith in him and his plan! Friday was a long night as the surgery started around 5pm and we didn’t get to see her until about 11pm. I want to personally thank my mother Theresa, Sarah’s mom Barbara, Sarah’s sister Britt, my aunt and uncle Sandy and Rich, our friends Brooke, Franny, Jim, and Kathy for being there for us during Belle’s surgery….we were not alone at all in this process!
I think I was creating a path in the carpet from all of my pacing in the waiting room. Everything went well during surgery just a little longer than planned. She did end up getting some bleeding at the biopsy site which can be problematic and also some slight paralysis of her left side of her face and her left arm so they did a quick MRI which they had to resedate her to take. I was kind of freaking out at this point wondering what was going on. The neurosurgeon was relatively ok with the amount of blood and did think it warranted any surgical intervention. He said the paralysis should completely resolve soon. So we were happy that she did well and was out of surgery. Everything seemed to be going as planned…..one night in the hospital maybe two at the most….let the healing begin so we can get Belle home! Well let me tell you what not everything is easy or as we plan it! What was supposed to be a short stay turned into 7 days….yes 7 days in the hospital filled with long nights and stressful moments. The paralysis did completely resolve which was a God sent…..she did experience extreme dizziness, extreme facial swelling on the right side (completely closed her poor little eye), nausea, headaches, and the inability to walk on her own without assistance. Not to drag out our hospital stay…..things did improve a little each day with some setbacks during the process. The neurosurgeons said all of these things can be expected for the surgeries that she received…..well let me tell you what I don’t remember hearing any of those things possibly taking place. I think that they don’t want you to sleep at night when you stay at the hospital between the twin “bed” aka fold out uncomfortable couch they provide (mind you both Sarah and I were sharing that) and constant interruption throughout the night like every 2 hours it was hopeless to get any sleep! Sarah and I were frustrated but rolling with the punches. We just wanted Isabelle to be well enough to be home for the holidays!
I want to take a moment and explain to those of you that have never been to Children’s Hospital PICU….there are many sick kiddos there far worse off than Belle and it gave light to our situation and we wouldn’t help but feel and pray for those hurting far more than us. Life is fragile and every day is a blessing! Give thanks for your blessings every day and appreciate the important things in life! Too often we focus on the wishes and wants in our life rather than the small things that we should be thankful for that we already have….lesson learned for me…I count my blessings every day!
So back to Belle…she was improving and got the thumbs up to go home before Christmas! We made it home by Wednesday and our bed at home never felt so good! Isabelle’s dizziness had resolved and the headaches were getting better (only needing Motrin about every 8 hours). I guess going through the cerebellum with a needle is quite easy but very disruptive to brain function so it causes swelling and disrupts balance and other things so it just takes a little with for things to reset if you may. It felt kind of like we had a newborn again as we had to wait on her hand and foot since she was unable to walk on her own and she did have difficulties feeding herself certain foods that required more hand skills. But praise the Lord things were improving and getting better every day and Christmas was great and we were so happy to be home!
The only thing left lingering in our minds was the biopsy results and what the plan was to address the tumor. We asked the oncologist to wait until after the holidays to discuss the results so we had an appointment for Monday the 28th to discuss that. I can tell you as each day neared I was more nervous and sleep a little less. I was praying constantly for God just give Sarah and I peace of mind and to continue to trust in his plan…..sometimes we stand in the way of that….I’m continuing to learn to let go and let God take the lead! I’m a work in progress J Thank goodness God is patient!
So Monday came and we were hopefully but cautiously optimistic about the results. Something that I have learned since dealing with Sarah and her journey with her breast cancer. Belle came with us so that the oncologist could do an examination on her to see her progress since surgery. So the results were not completely what we wanted (which was a benign tumor) but to be honest what we expected. Belle has a grade II Glioma Astrocytoma…which is best described as a low grade cancerous tumor…..this certainly gives us hope of successful treatment options.
So what’s the plan…..well its long one but we will fight every day and be there to support Belle to get through this journey! She will require a full year of chemotherapy for all of 2016. She will start this process on January 4th…..with the surgical placement of an access port in her chest. Given the sheer volume of chemotherapy that she will receive doing this intravenously is not an option so a port is the best option and with be less painful for her over the long run. The port will be placed under the skin so she will be able to go back to her swimming class…..yeah for Belle! I just love watching her go to swimming class she see that smile on her face! I take the time to really watch her and see her joy…I often times see other parents sitting there on their phones texting or looking at Facebook and missing what is right in front of them and not being in the MOMENT! I share this small gift with you other parents out there….don’t get caught up in the hustle and bustle of life but rather just be in the moment with your kiddos whenever you can…..
She will start the chemo regiment on the 8th. The regiment will be three Fridays in row of chemo and then one off and then start the cycle over for a full year. She will be receiving a fairly lite dose of chemo if there is such one and as a result will most likely not lose her hair, it may thin a little but it shouldn’t fall out which is good! As always with chemo there are some side effects most commonly nausea and constipation but we will do our best with available medications to combat those side effects. We have not explained everything to Isabelle yet since I know that the initial surgery was pretty traumatic for her so we just want to wait a little longer before we go through all of this with her. Otherwise she a strong and brave little girl and is taking this situation with strides and still laughing and having fun during this winter break! I just want her to be a kid and not worry about these things….allow mom and dad to worry about it!
So that’s where we are right now…..just taking one day at time! Still trying to heal from Sarah’s journey but ready to start the next with Belle….
Short update….Isabelle has been doing remarkable!!! Looking at her, you would never know the battle that she is fighting. Belle had her last MRI on June 24th and we received the news that the tumor did not grow, which was wonderful and confirmed that her tumor is not a GBM. We will continue on course with her chemo regiment until year end and we will have another MRI in 3-months,
Our other blog entries can be found through the link below….
We are just at the beginning of our story with Ashley and her illness. A little over a year ago, just before Ashley’s 7th birthday, we started to notice some physical changes with her that seemed odd. We consulted with a pediatric endocrinologist who ran a series of test and determined that while she had some “off” hormone levels in her body, that she was “just on the wide side of normal.” As the year progressed however, Ashley continued to manifest changes in her body that didn’t seem normal to us. In January of this year, we decided to take her to Children’s Hospital of Colorado for a second opinion. What I thought was going to be a quick appointment with maybe talk of more tests, turned into an all day event with blood work and an ultrasound of Ashley’s abdomen. By that afternoon, it was determined that Ashley had a 4 cm tumor in her adrenal gland. Everything moved so quickly after that: meeting with the surgeon, more blood work and an MRI. Within a week, we were scheduled for surgery. Ashley was so fortunate in that the entire tumor had remained encased in the adrenal gland and so no chemo was needed. The tumor has continued to cause problems with the hormone levels in Ashley’s body and so we are working to get that resolved while entering the five-year tumor watch and also running genetic testing to determine whether or not Ashley may be pre-disposed to cancerous tumors. Ashley hates needles and so every blood draw continues to be a challenge but we have been amazed to see what a strong little girl she is becoming. We try to focus on every moment of good that has come through all this and are so excited to attend our first Miracle Party. Ashley is a princess through and through and we are hopeful that her reign will last for years to come.
Our 4 year old son, Caleb was diagnosed with T-cell Lymphoblastic Leukemia on July 1, 2015., when he was 3.5 years old. By Aug 5, 2015, he was declared to be in remission after the first phase of Induction.
At this point of registration to the 2016 Fairytale Ball, he is at the Children’s Hospital because he has an unexpected complication with the chemo drugs, and developed the rare Veno-Occulsive Disease. chemotherapy treatment.
A month after Caleb’s initial cancer diagnosis, I started updating Caleb’s progress and treatment on Facebook for my concerned friends and family living in Singapore and other parts of the world. Very soon, because of Caleb’s Facebook page at www.facebook.com/CalebsVictorySong, we have kind strangers, fellow cancer parents, and our friends and family forming our support structure and we have been covered in prayers throughout the day from different parts of the world.
We hope his story will be a testimony of God’s abiding love, and to get in touch with other parents and caregivers so that we can navigate and help one another as we walk this very tough road together.
At 6 months Bentley was admitted to the hospital for an unknown diagnosis. He was weak all over his whole body and was unable to even hold his own head up, every time he was picked up or moved he just cried out in pain. He had made 3 ER visits and 2 pediatrician visits before he was finally admitted to the hospital for what they thought was Botulism. He was immediately treated for that. After a day in the hospital they then thought he had spinal meningitis so treated him for that. Finally after not getting any better they intubated him and gave him an MRI where they saw he had a severe bleed in his spine and neck. From there we quickly began to learn about his Severe Hemophilia. He currently has an inhibitor to his factor 8 medicine. He has had multiple bleeds and hospital stays, he has been getting treated with NovoSeven and just recently Feiba. Bentley has a Broviac in his chest that he receives all of his medicine. Hemophilia does not run in our family so learning about all of this has been a bit over whelming. We take it one day at a time and count our blessing.
Auvianna was diagnosed with AML Leukemia 4 days after her baby brother was born. She went into cardiac arrest, lost her vision, suffered a brain injury and stayed sedated in the PICU for over a month. After the first round of chemo she went into Remission . She completed 4 rounds of chemo, had vitreous gel eye removal surgery. Auvianna has stayed in Remission, has got her vision back , and is pretty much a normal 3yr old.
Daniel broke his leg last March. When the break had still not healed enough to allow him to put weight on it six weeks later, his parents took him (and his nine day old baby brother) to the doctor for more x-rays. While there, his mom mentioned his pale color and asked if the doctor could order a blood panel, asking if a nutritional deficiency could delay healing. Before the tests had even been run, the lab technician ran to find the doctor, telling him Daniel’s blood looked very strange. The doctor agreed, calling his mom’s cell phone to tell her to take him to the emergency room right away. While there, they realized Daniel only had 1/4 of the blood he should have, so they sent him to Colorado Children’s Hospital by ambulance. One year later, Daniel has a one year old baby brother, is in remission, and is 1/3 of the way through his three years of treatment.
Our daughter Sophia was diagnosed with Wilms Tumor last March. We had a very hard and a difficult time to understand all of this process, but she is so brave that we kept going. She is on remission now & we are very happy to see our girl happy & healthy again. We will be honored to meet other families that went or still dealing with this horrible disease.
Diagnosed in February, 2010, Brendan endured 5 cycles of chemotherapy at the Rocky Mountain Hospital for Children, having to be in isolation for the majority of the time. He was released on Halloween morning that year, and has been in remission ever since. Brendan was and ESPN My Wish child in 2011, when US Soccer National Team captain Landon Donovan granted his Make-A-Wish. Find his video on YouTube. Search ESPN My Wish, Landon Donovan.
Sofia arrived at my home on 2/2/12 as a foster child in the midst of her second time receiving Chemo. Her first tumor was discovered at age 21 months. She had a relapse at age 4.5. After a year of Chemo, it was decided to stop treatment. She was in remission for 2 years! Last year 3 more small tumors were discovered. We tried one treatment with very negative side effects. Again Oncology decided to stop treatment. This August, she was diagnosed with another tumor. 2 weeks ago, she had resection surgery and to release her 4th ventricle which was blocked. I adopted Sofia in May of 2014, knowing her medical condition was stable but likely to reoccur. Her current struggle is to recover from surgery, regain the use of her left arm/hand, learn to sit, stand and walk again. She is part of a large loving family and we will remain by her side throughout her life and all these battles.
James was diagnosed at the age of 3 in 2004 with ALL Acute Lymphoblastic Leukemia. He went through 38 months of treatment at the Children’s Hospital in Denver under the wonderful care at the Center for Cancer and Blood Disorders and attending physician Dr. Brian Greffe. James finished chemo and maintenance in 2nd grade in 2007 at the age of 7. He was in remission for 20 months and nearly 5 years to the day – August 19th 2009, his relapse was discovered on his scheduled check up. James went back into chemotherapy and without a sibling bone marrow match, this was the only option. After a long 10 months of treatment, James passed on May 25, 2010, several months shy of his 10th birthday. Today James would be 15 years old and a sophomore in High School! We as a family do everything we can to keep his spirit very much alive in our family and continue to pay forward hsi goodness that he was able to impose on others.
Nicole Bicknell – T-cell Lymphoma, T&B-cell Lymphoma, B-cell Lymphoma, Mature B-cell Lymphoma and Burkitts Lymphoma
Nicole was born missing the CPS enzyme in her liver. At 20 months of age she received a liver transplant. She went on to live a normal childhood until the age of seven when she was diagnosed with her first cancer. T-cell post transplant Lympho-proliferative disease, aka t-cell lymphoma. She went on to battle 4 more cancers finishing her last cancer treatment on January 4th 2013. She survived a 7 year battle fighting 5 different cancers.