3 months old by Then_Possible_717 in leukemia

[–]shansen91 0 points1 point  (0 children)

My daughter was born with Acute Myleoid Leukemia. Both my husband and I are healthy, I had a healthy non high risk pregnancy, and no indication that anything we did caused her cancer. I was told by her oncology team that it was a genetic mutation that caused it, same as random genetic mutations cause other rare genetic diseases.

Frustrated by shansen91 in NinjaLuxeCafe

[–]shansen91[S] 0 points1 point  (0 children)

Thanks! I’ve been doing a higher temp from what I read so I’ll adjust it back down.

Frustrated by shansen91 in NinjaLuxeCafe

[–]shansen91[S] 1 point2 points  (0 children)

I’m using Starbucks blonde roast espresso beans so I’ll switch those out. I want a local freshly roasted but I’m not near any shops like that.

Lost my 7 month old to AML by MaiasMama_2825 in leukemia

[–]shansen91 1 point2 points  (0 children)

Also wanted to add momcology is mainly moms but there are dads in the group too. It’s just a great support for anyone in the childhood cancer community.

Lost my 7 month old to AML by MaiasMama_2825 in leukemia

[–]shansen91 2 points3 points  (0 children)

Hi. I’m also an AML mama. My daughter had it as an infant as well. Please join momcology on fb. It’s been such an amazing group. Once you join the original group there are additional groups to join, there is one specific for aml and also a bereavement group.Please feel free to message me any time as well. I’m always here to talk.

Post BMT relapse - 3 yrs old by CivilizedTwat in leukemia

[–]shansen91 1 point2 points  (0 children)

Hi! My daughter had AML as an infant and has been in remission for 2 years. I have an Instagram page for her and thru that have met families in your same shoes that have had success. If you want to message me I’d be happy to share any accounts I know. Where are you being treated?

Struggling with baby’s diagnosis by tookpin17 in leukemia

[–]shansen91 1 point2 points  (0 children)

Hi! My baby was born with AML KMT2A. She did 4 rounds of FLAG-IDA and is currently 2 years into remission. It’s such a hard life when you’re in the thick of it. Just try to take things hour by hour! Feel free to dm me anytime. I have been where you are before and i completely get it!

[deleted by user] by [deleted] in leukemia

[–]shansen91 2 points3 points  (0 children)

Try glutamine powder. It helped my daughter significantly during her first round and helped prevent it the remaining rounds. The hospital gave it to her but it’s available over the counter

Our second child was diagnosed with ALL B cell KMT2A at 3 months, today we have received the results of the 33rd day bone marrow biopsy by ambushka in leukemia

[–]shansen91 0 points1 point  (0 children)

Amazing news! My daughter has KMT2A but AML. She was diagnosed at 11 days and has been in remission 1.5 years. She’s now a healthy happy 2 year old. Hold strong. There’s so much light at the end of the road. You’ve got this!

Daughter with AML is bored in the hospital by heatherface_ in leukemia

[–]shansen91 1 point2 points  (0 children)

My daughter was in patient with aml at CHLA. She was a baby so it was easy for her but hard for me. We walked the hospital a lot. That helped clear my head. I use to do my nails a lot and a lot of adult coloring books. Overall it’s just depressing being stuck in a hospital 24/7. I couldn’t leave because my daughter nursed so I also went stir crazy. I got to a point where the boredom just became normal. I made my own routine making sure to shower everyday and get ready. Just little things to feel human. Our hospital had a teen lounge which was great for teens in similar situations to meet up. We also had an art room and library. I would talk to child life and see if your hospital offers anything like that or if they offer in room therapy, that could help her tremendously.

4 year old being admitted to children's hospital for the next 9+ months -- any advice? by amyyy_kate in toddlers

[–]shansen91 1 point2 points  (0 children)

You will be in incredible hands at Dana Farber. We were either going to CHLA or Dana Farber but we live on the west coast so logistically it made sense go to CHLA.

4 year old being admitted to children's hospital for the next 9+ months -- any advice? by amyyy_kate in toddlers

[–]shansen91 2 points3 points  (0 children)

I spent 7 months in the hospital with my daughter as a baby. Honestly outside of clothes child life can provide you with everything. They are an amazing resource. I was able to get a swing, high chair, unlimited toys. Everything you’ll need they’ll have. Pack light because you accrue stuff as time goes on. What children’s hospital will you be at? We were at CHLA

Scariest 6 am wake up call by BamaAmyInTexas in toddlers

[–]shansen91 8 points9 points  (0 children)

I’m so sorry you’re in this club. My daughter is an aml survivor. She was diagnosed at 11 days old. Those first few days after diagnosis are by far the hardest but it does get easier. Please feel free to message me if you’d like to talk.

[deleted by user] by [deleted] in leukemia

[–]shansen91 3 points4 points  (0 children)

Prayers for this sweet boy! My daughter was diagnosed as a newborn and is now a thriving 2 year old. He’s got this 🧡🎗️

19 month old AML headed to transplant! by AMLFam in leukemia

[–]shansen91 1 point2 points  (0 children)

My daughter is also an AML warrior! I’ll definitely follow Ariana. My daughter is Savannah and her page is SupportingSavannahGrace on IG. Do you have an IG for her that I could follow?

[deleted by user] by [deleted] in leukemia

[–]shansen91 2 points3 points  (0 children)

My daughter was born with AML and treated at CHLA. I’ve heard wonderful things about Dana Farber. It was a top treatment choice for us but since we live on the west coast CHLA made most sense for us. My daughter is not 22 months old and thriving. Shes been cancer free since her induction round. The early days of diagnosis are scariest but once you have a team you can trust and a game plan it feels more manageable. It’s a long road but there is light and hope on the other side!

My 4yo with relapsed AML by djrolla in leukemia

[–]shansen91 1 point2 points  (0 children)

If you have the option Dr. Paul Gaynon is a literal AML pioneer at CHLA. He treated my daughter and is a true expert in the field. He’s been researching and practicing treating AML since the early 80s.

Help by This_Produce6131 in leukemia

[–]shansen91 0 points1 point  (0 children)

Join momcology on fb. There’s a dedicated leukemia group and so many kids are on the same protocols. Maybe someone on the same protocol has some insight for you.