Indy was admitted to the hospital February 16, 2018 for treatment of Myelodysplastic syndrome- a disease of the bone marrow that causes abnormal production of blood cells including white blood cells, red blood cells, and platelets. It manifests much like leukemia in a child with Down syndrome, and the treatment course is the same as a child with AML Leukemia. If left untreated eventually all cases of MDS progress into leukemia for kids with Down syndrome. Myelodysplastic syndrome [MDS] is typically a disease that affects older adults, however children with Down syndrome are at risk for it because of their unique genetic make-up, including high cellular levels of heavy metals like mercury. Unfortunately, this is something that Indy’s genetic bone marrow studies show she was born with. When she was 3 months old she started showing signs of a blood disorder as patches of petechiae (broken capillaries under the skin) started popping up over her body. I took her in to the doctor to get labs, but after multiple attempts and clotted blood samples, we decided to hold off and try at a later time. We made the assumption that if her samples kept clotting, we didn’t need to worry too much about her bleeding or having low platelets, so her doctor and I both felt comfortable waiting and watching. It is known that kids with down syndrome often have strange findings in their blood cell lines, so I tried to brush off the abnormal amount of petechiae she was getting, even though it continued to happen frequently.
Fast forward several months… through an alternative healing method I utilize called foot zone therapy, I noticed that Indy’s spleen was swollen. This is often caused by chemicals, heavy metals, lack of sunshine, or a problem with red blood cells. I could also feel that her liver was swollen from toxins and viral matter. Despite my best & undying efforts, I could not get the swelling to go down in either organ. A swollen liver and swollen spleen are consistent with MDS & Leukemia.
Indy’s overall development and immune system defenses plummeted in November . Our once highly motivated and physically active little girl became fussy and tired. She wanted to be held constantly. She didn’t want to walk very much and her physical milestones like pulling to stand and climbing stairs halted. Her development in all areas either plateaued or digressed. She started getting frequent, intense sicknesses. Fevers as high as 105, severe croup, RSV, and a double ear infection that I couldn’t treat at home- which led to her first dose of conventional antibiotics.
The day after Indy started her antibiotic she became very pale. As a medical provider I knew that extreme viral infections like RSV can lead to a dip in iron stores and temporary anemia, so I assumed that was the case for Indy and started treating accordingly. We had a trip to Hawaii planned in a few days and felt that Indy would do well to escape winter and fully recover in the sunshine and clean ocean air, so we proceeded with our plans.
The first few days of our time in Hawaii were hopeful. Indy seemed to be feeling better, and the sunshine was restoring my broken mothering spirit. However her paleness was not improving, and 3 days after we arrived on the island Indy’s eyes became puffy and swollen.
I called a few of my health provider friends, trying to put several minds together & work through what might be causing her symptoms. I worked every day on our trip to try and restore her health. We had hopeful moments and times where I thought we had made it- but those moments were short lived. Her health continued to decline. She had no appetite, didn’t want to bear weight on her legs, she was extremely pale, low energy, and she started getting low grade fevers daily despite just finishing an antibiotic. Over the course of the month she had lost 2 of her tiny baby pounds. She was very sick, and she had all the symptoms…. I knew that she had leukemia.
Indy was diagnosed with Myelodysplastic syndrome January 30, 2018. The day before my 32nd birthday. Life inside our world seemed to be falling apart.
As a Nurse Practitioner who practices functional medicine and Medical Medium protocols, I believe that Indy’s disease was caused by a very aggressive form of the Epstein barre virus (EBV) that was breading on the heavy metal mercury, which is always present in people with Down syndrome as mentioned previously. –So if this was caused by a virus, how is it something she was born with?– We can inherit these aggressive viruses from our parents, and each generation gets a stronger form of the virus. Indy was born with virus and mercury in her body, which all led up to this disease of her bone marrow. The antibiotic that Indy took for her ear infection allowed the virus to become stronger- and was the final push it needed to truly manifest itself as MDS. Aggressive EBV can manifest as leukemia in children, according to Medical Medium. Science and research does acknowledge that viruses are the culprit behind many cancers. Eventually, viral cells mutate into cancer cells.
[To learn more about cancer and viruses- listen to THIS podcast by Anthony William]
After we received her diagnosis I worked endlessly at home to try and correct things for Indy. I wanted SO DESPERATELY to avoid chemotherapy for my baby girl. My efforts to heal her made her strong & ready, but we were not able to avoid chemotherapy. Her illness made itself at home in the bones of her face which was causing horrible swelling around her eyes.
An MRI on Friday February 16, 2018 showed the bone marrow of her face to be fibrous and empty of healthy cells, consistent with MDS/leukemia. It showed diffuse edema of the tissue around her eyes, which was putting her vision at risk. In the days prior to her MRI Indy’s eyes began going cross-eyed from the pressure of the edema. In order to save her eyesight and prevent permanent damage to her optic nerve, it was recommended that we start chemotherapy immediately. And so, we did.
Indy is currently undergoing her second round of chemo. She will need 5 rounds in total, each round lasting about 25 days (chemo is only given the first 4 days of each round, then we wait for her blood counts to drop and come back up). She tolerated and responded to the first round so well (almost complete resolution of disease! Yay!) that we qualified for a study in which lower doses of chemotherapy are used, and we do 5 rounds instead of 6. While this is still extremely hard for me to do, I can clearly see how much better Indy is feeling since clearing out her bad cells. Her development has sky rocketed in all areas. She has caught up and far surpassed where she was prior to becoming sick. It has been incredible to see, our motivated and hard working little girl is back.
My hope and belief is that we can rid Indy’s body of virus and these abnormal blood cells and she can come out of this her healthiest, and best feeling self. The prognosis for MDS and children with Down syndrome is great- > 90% remission rate with conventional treatment and low risk of this ever coming back. We are employing conventional AND alternative treatment methods with Indy to really strive for total healing.
Indy’s case has been very unique, just like her. The doctors have not had a clear answer as to all the different ways this is affecting Indy. There has not been one actual cancer cell found in any of her bone marrow biopsies or facial biopsy. Her illness never progressed to actual leukemia and has never affected her white blood cells. It has only affected her red blood cells and platelets. I have been given reassurance time and time again that this is because of the many things I have done to keep her healthy during her life. At least I have that to hold in my heart in the midst of this storm ❤.
We have total faith in complete healing for our baby girl. We are so grateful for every kind of medicine. We are so grateful for her progress and healing thus far. We are so grateful for the thousands of people cheering us on and praying for Indy daily. Thank you.
Indy Llew, we all LOVE you! #prayforindy
14 Replies to “Myelodysplastic syndrome & Indy’s prognosis.”
Keep fighting beautiful baby girl.
Finding your blog, “meeting” your sweet daughter, has brought such joy to my day. I may not always be present here or on IG but when I do show up I am fully present. I shared your story on my fb page asking for prayers for a full recovery for your sweet little Indy. With love from afar…..Pat
Thank you so m in Pat! It means a lot that you shared Indy on your FB page and asked for prayers ❤️ Happy to have you here. Xo
Most precious girl ever. Thank you for sharing.
My friends son had aplastic (sp?) anemia when he was a baby and got really sick. The Dr. told her it presents the same as leukemia in children. Fast forward.. he is now a super healthy 16 year old boy who plays soccer!! I have every hope and belief that sweet Indy Lew will make a full recovery as well! I think of her often and send positive thoughts out into the universe that she will be a healthy, happy girl, running and playing when she is 16 as well!! ♥️😊
Yes! Thank you for sharing! I love heading hopeful stories like this. I have the same vision- a healthy Indy Llew for many many years to come ❤️
I have been following you on Instagram for a while and praying for Indy. I came over to read your blog posts. I know how hard it is to keep a little one entertained in the hospital. I have a YouTube channel, I read children’s books. I originally recorded myself reading for my 4 year old niece who has Epilepsy. She has to go in the hospital alot. She likes to watch the videos there. Just thought I would suggest it. My channel is called Read Along With Aunt Neny.
God bless you and your family, Jenifer
How cute! Thank you for sharing! We will check it out 😊
Praying so much for your beautiful family and your sweet baby girl. Strong moms like you inspire me everyday.
Praying for this sweet girl – she is the most precious baby! Unbelievable beauty! <3
Hello, i follow you on instagram so i know you are done with all treatments,congratulations!! I do however wonder if Indy was ever vaccinated or you in pregnancy with her.
Hello and thank you!! We are so grateful to be done with treatment.
Indy has not received any vaccinations and I did not get any while I was pregnant with her.
Indy makes my heart burst. I have been following her progress and I cried tears sadness when you started your treatment journey. I too have a child with Down Syndrome who is nearly 2 and couldn’t begin to imagine what you were going through. Your family is a true inspiration and example of what strength, positivity, faith and love can achieve. Your beautiful girl has stolen my heart and I pray she has a happy and healthy life. An adoring fan from the UK. ♥
She is flying high❤