Kash’s cure for Acute Myeloid Leukemia

On July 15th, Kash was rushed to Valley Children’s for critically low blood levels and suddenly losing his ability to walk.

This sparked a deep investigation as to what is happening to our baby boy. Kash is suspected to having some form of leukemia, but at this time it is still unknown as to what exactly is happening to his little body. Everyday, Kash has continued to decline with still no full answers or possible treatment options despite having 2 bone marrow biopsies, genetic testing, diagnostic imaging with more tests to come. He is requiring daily platelet and blood transfusions, and is now fighting an infection from his IV placement. We are asking for support as Kash is 2 hours away from his family and siblings who have been taking time away and commuting to be with him during this journey in his life. It is still unknown how long Kash will be hospitalized and what further tests and treatments he will require. Kash’s family is asking for prayers and support and to share his story.

With your support, Kash’s family can ease the burden of losing time at work and the expenses from commuting to the hospital as well as the overwhelming concerns for treatment cost.

We will continue to update his story as we hopefully find answers.

Thank you for your love and support during this terrifying and unexpected time.

*UPDATE* 7/30/24

Kash’s labs are still all over the charts. His white cells are still below normal range as well as his Platelets. Still very weak and not moving independently at this time as he is in severe pain. His little body is swollen all over from fluid. One of his lab tests for his bone marrow has come back concerning for myeloid blasts and will soon under go more myeloid malignancy screening to better rule out myeloid leukemia. Still hopeful every day that the doctors will soon know what is happening. We will continue to update as more information comes through.

*small milestones* 7/31/24

Today Kash fed himself! It took so much strength and he was very unstable, but he was able to bring his hand to his mouth and eat some chips. It’s the little things we take for granted in life. Unfortunately, his blood counts today were trending downward again, but he hasn’t had a blood or platelet transfusion for the past two days. He had a special test done that may point in the right direction, but the result wasn’t favorable and is concerning for HLH. The doctors are still working hard and waiting for the rest of his tests to come back from Cincinnati. More updates to come as the days pass by.

*UPDATE 8/1/24*

It was a rough day for Kash today. He has been having strange eye movements so he had an EEG to test for any seizure activity (results pending). He also had a repeat ECHO for his heart that showed a small amount of fluid around his heart (pleural effusion) but at this time doctors aren’t fully concerned given how little fluid their is. The most difficult part was this afternoon Kash’s mom became concerned with redness around his IV in his arm and progressive discoloration in his hand. The nursing staff consulted with the physician and a STAT ultrasound was ordered. His ultrasound confirmed Kash has a blood clot in his left arm. This is where they have been placing his IV as all of his other veins are unusable at this time. Because of this clot Kash now has no IV access for any medication or fluids. As of right now Kash is doing ok, however, they are concerned if he begins to decline over night he will need to be placed into the ICU. Now is the time we ask for prayers to get past this point. Thank you for all your thoughts and prayers, love, and support.

8/3/24

No real updates for today. They were able to establish IV access again yesterday. No returns on any labs. They are doing a Karius test to rule out any bacterial, viral, or fungal infection that may be making him sick. His fevers are still spiking every few hours for an unknown reason. Still just holding on for answers.

**UPDATE** 8/6/24

No true answers at this time still, HOWEVER, Kashs new doctor at the hospital does not feel he is experiencing HLH. This doctor feels he has Myeloid Leukemia, but early stages. Today Kash will have a central line placed in his chest for his medications as well as a skin biopsy on some lesions he is developing in his skin. Originally it was assumed he was developing a possible abscess, but after over a week of Vancomycin, Cefipine, and Oxicillin the lesions look as if they are growing in size. These lesions may be a manifestation of AML. Kash’s doctor wants to biopsy a lesion and see if it is positive for AML. IF the lesion is positive Kash will begin Chemo. However, if the lesion does not look consistent with AML a repeat bone marrow biopsy is likely to be done in about a month to see if his AML markers are rising. The doctor feels his blood, genetic tests, and inflammation markers aren’t high enough to fully diagnose him with AML. Hopefully in a few days we will have more answers.

*UPDATE* 8/8/24

We met with Kash’s doctor who let us know while Kashs skin biopsy reveled no leukemia cells or definite blasts, his bone marrow does still reflect immature monocytes of around 10% cell population and low level blast range of .86% and this is not normal. The findings of both marrow biopsy’s, skin biopsy, and genetic tests do not meet the criteria for leukemia. His doctor has ordered a PET scan to check his whole body for any bone, tissue, or organ abnormalities. If his PET scan reflects any abnormalities Kash will have a tissue and marrow biopsy in the areas identified. At this time without a diagnosis or treatment plan Kash does not look like he will be going home yet. There is some talk that if the PET scan and further biopsy’s do not reveal answers Kash may be needing further specialized care and may need transfer to UCLA or Stanford. As always we will continue to update regularly.

Kash took a tour of the hospital today 8/8/24

Play time AKA physical therapy 8/8/24

Fun new train was very interesting.

*UPDATE* 8/10/24

Kash is scheduled for his PET scan on Monday. In the mean time the doctors have decided to begin immunology testing to rule out in autoimmune disorders. As of now 10 more lab tests have been added to start to rule out autoimmune disorders. The doctors have reached out to an immunologist at Stanford to assist with possible diagnosis and corresponding tests to perform. Kash was able to go to the hospitals outdoor park today and is now resting. As more information comes we will update.

Post cake pop naps.

*UPDATE* 8/11/24

Kash has had a consultation with infectious disease as well as rheumatology today. Rheumatology will be testing for many autoimmune disorders such as juvenile arthritis, Lupus, Sröjens Syndrome, Sweet Syndrome, Sarcoidosis, and autoinflammatory syndrome as well. Infectious disease has joined the crew as well as his lesions are not improving despite multiple strong antibiotics rounds. Tomorrow is kash’s PET scan and the staff is requesting a full body MRI with focus on his legs and pelvis. His right arm is still very swollen and painful to touch. He’s a lot more active and tried standing today. Thank you for being here with us and following along. More to come as always. Stay blessed.

*UPDATE* 8/13/24

Kashs PET scan showed many area of abnormality in both arms and legs with areas of what appears to be abnormal bone growth as well. They pulled him into a STAT bone marrow biopsy of the right and left side today and will send the samples to Seattle for evaluation. The doctors are also retesting his blood and marrow for myeloid leukemia and lymphocytic leukemia again. They have also added testing for Lyme disease, a few other tick born diseases and another type of animal disease as well to rule them out. Hopefully he will be able to proceed with his full body MRI tomorrow as scheduled as well. Our fingers our crossed and prayers voiced that we will have some answers or guidance after all this testing. Will send updates soon.

UPDATE* 8/15/24

Kash’s doctor has confirmed Kash has Acute Myeloid Leukemia. What this means now for Kash and his family; Kash will begin Chemo next week and is expected to be on chemo for the next 6 months. This means Kash will remain at Valley Children’s for at minimum another month and may be able to down grade and go home eventually and continue treatment by commuting back and forth to Valley Children’s for his treatments. We will continue regular updates as this new journey begins. We are very grateful to finally have answers and begin the next steps. The doctors feel very confident in his treatment and prognosis. Thank you all for following along with us and reaching out with words of encouragement and prayer.

*edit* Kash will start chemo today 8/16/24. Please pray his body accepts it well and he stays as strong and healthy as possible during this time.

*check-in* 8/19/24

Not much of an update but we wanted to share Kash so far is tolerating chemo very well. He is much more active and happy and has started moving around so much more. The doctors are very happy with this, but we aren’t sure how short term or long term his energy will be. He is on day 4 out of 10 for his first chemo cycle and tolerating it well.

*UPDATE* 8/24/24

Kash is doing AMAZING. Handling chemo very very well. Kash did have a lumbar puncture to check for cancer cells and unfortunately did come back with 1 blast present. This means the cancer cells have reached his central nervous system. So what does this mean? Cancer cells in the central nervous system are not good because the cells will be able to live and not be affected by the chemo. To combat this Kash will have chemo medication and other medications injected into his spine during his lumbar puncture procedures. Despite this finding Kash is still doing amazing. He got a much needed sibling day full of lots of play time and even found the strength to climb the jungle gym with assistance.

*UPDATE* 8/27/24

Kash man update. Kash has been marked as having some gene deletions with abnormal karotype findings. Because of these findings Kash’s ability to enter remission long term/permanently will be difficult to achieve with just chemo alone. Kash’s doctors feel he will benefit most from a bone marrow transplant when he is able to reach a state of remission. For now Kash has finished his first cycle of chemotherapy. More information to come as it comes out. Thank you for following along.

**9/10/24**

Not very much to update. Kash is still at Valley Children’s for now. He is still doing well, but will still need more chemo and a bone marrow transplant. We are hopeful he will come home this week/early next week for a 2 week break then be transferred to City of Hope. He is getting stronger and can stand with assistance but still hasn’t started walking yet. Updates to come.

**UPDATE**

KASH IS HOME!!!

Kash was discharged from the hospital yesterday (9/14/24)!!! We are so grateful to have him home for 2 weeks. After 2 weeks Kash will transfer to City of Hope to start his next journey. During this time Kash will be home with his family and relaxing. He is now walking assisted and happy as can be. As always we will continue to update as information comes through. Thank you all and keep us in your thoughts during his respite time.

**UPDATE** 9/26/24

We are so proud today! Last Friday Kash had a bone marrow biopsy. The results came in yesterday. KASH IS IN REMISSION!!! At this time his bone marrow results shows his bone marrow is functioning as it should and producing all three types of blood cells correctly and healthy. Kash will be going back to Valley Children’s on Monday to proceed with the next steps of his care plan. BUT THIS IS AMAZING NEWS!!! We will update again when we get settled in on Monday. We are so grateful for this news with his 2nd birthday coming this Saturday. Thank you all for praying over our little man.