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what it feels like

sideroblastic anemia: 28 days post-transplant and waiting

"they told us the plan and the official transplant date. that was surreal. i couldn't believe what i was hearing."

by emma jones

jun 14 2021

5 minute read

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what it feels like: my son has sideroblastic anemia

tanner was diagnosed at just six minths old. supplied

tanner mcleod was just six months old when he began to wheeze constantly. concerned, his mother miranda brought him to the emergency room where she was told tanner has sideroblastic anemia.

sideroblastic anemia is a group of blood disorders where the bone marrow is unable to produce healthy red blood cells, according to the genetic and rare disease information centre. because of this, the hemoglobin in the red blood cells, the protein responsible for delivering oxygen throughout your body, is ineffective. this disorder is so rare it’s difficult to determine the percentage of the population that has this condition.

to help find a match for tanner and others in need of stem cell transplants, miranda started natamakewin , a foundation that raises awareness for the need for people of different ethnic backgrounds to register to become stem cell donors . miranda wants everyone to know that the process to register is easy and could save the life of someone in need.

what was tanner was diagnosed with?

tanner was diagnosed with sideroblastic anemia. it is a blood disorder diagnosed at six months old; today he is seven years old. since diagnosis, he’s been receiving a blood transfusion every couple few weeks, depending on how often his hemoglobin comes down.

how did you find out about tanner’s condition?

he was wheezing. originally, i thought it was bronchitis or asthma. i thought it could have been that, or, you know, it was just wheezing. but that’s the reason why i took him to emergency. the doctor noticed that he was a bit pale. but to me at the time, it was just his normal skin tone.

what goes through your mind when you hear this diagnosis?

at the time of his diagnosis, i didn’t know much information about it. so, i was hoping for the best, that there was nothing so serious, you know? but blood is one of the most important needs for our body.

on top of the blood transfusions, are there other treatments for this condition?

tanner had a [stem cell] transplant on march 23 ^rd and 24 ^th .

the transplant was successful. but unfortunately, he had a bit of a setback last week which was one of the roughest days so far. it was just like a buildup of emotions and thinking and of everything.

what drove you to start your own foundation?

it turns out, my son has the exact same condition as some people in my family, one of them being my cousin. he found a stem cell donor when he was about 29, i believe. unfortunately, i’m not sure what happened, but he is no longer with us. another friend of mine didn’t find a donor and she eventually passed from complications, because repeated blood transfusions will eventually attack the other organs in your body. so, i was encouraged by their memory to do my own search.

i first began my search by sharing posts on social media on tanner’s story, on my own personal facebook page. at the time of diagnosis, i didn’t know much of what our life was going to look like, going forward. i started realizing that that this is going to be a challenge; it wasn’t going to be as easy as i thought. my son needs saving. someone needs to help him. that’s when i started the natamakewin [foundation]. we’re cree, first nations from central manitoba, and the word natamakewin is a cree word meaning to save, to help or rescue someone; the act of those three words combined.

it’s volunteer work with canadian blood services. i had to do some readings on how to hold stem cell registration events, because the donor pool of first nations people in the registry is low and tanner’s best chance was someone from his own ethnic background. not only did i focus solely on that, i encouraged everyone as well. we did a few of those events and then with my friends’ and family’s help we were able to host more then a few events. and then covid happened and that had to stop. so, i continued again, sharing on social media.

when did you find out that tanner was going to receive a stem cell donation?

right before new years of this past year, i received a phone call from the bone marrow transplant team nurse saying tanner has an appointment for an mri in early january. i didn’t ask any questions right away, but i knew it was the start of something significant for us. so, the mri appointment rolls around and then the next appointment was with the bone marrow team, where they told us the plan and the official transplant date. that was surreal. i couldn’t believe what i was hearing; it was unexpected and fast.

i’m like, this means there’s a match. and then they said, well, actually, it’s your son – tanner’s brother. i have two kids; tanner’s brother, teemu, is 17. all of us got tested, mum, dad and brother, to see if we were for a match for tanner, but it turns out none of us were a perfect match. however, teemu was a 50 per cent match and being young and 17 was an ideal candidate. they said because of medical advancements and research made in the last little while, this makes it possible to use a half match donor.

what was that like, when you heard that you could go ahead with this transplant?

happy. very, very happy. yeah, i was emotional because it was great news. and when teemu found out that he was going to be the donor for his brother, his comment was “i knew it was going to be me.”

at the time of transplant, on march 23, the bag of blood comes in. it was quiet that day because we’re all waiting and expecting the arrival and start of what we were all anticipating. so, it was quiet and three nurses arrived. no one said a word, except for tanner who asked, “is that my brother’s blood?”

today it’s been five weeks since tanner has been admitted. and it’s about day 28 post-transplant. tanner is closely being monitored. again, unfortunate setbacks, but he has a great medical team that are helping him to get better and taking preventative measures.

how are you coping through all of this?

the best way that i am able to. at times i feel like, what do i do? because of covid restrictions, no visitors are allowed, not even at entry point. unless you’re here for an appointment or with a child, like mom and dad. so, i’m just really grateful of the support services and resources available here at the hospital.

what it feels like is a regular series that explores the experience of being diagnosed, treated and living with a health challenge. have a story to tell? email info@healthing.ca.

emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on twitter @jonesyjourn

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sideroblastic anemia: 28 days post-transplant and waiting

"they told us the plan and the official transplant date. that was surreal. i couldn't believe what i was hearing."

what was tanner was diagnosed with?

how did you find out about tanner’s condition?

juvenile myelomonocytic leukemia highlights need for more diversity in stem cell donors

lack of diversity hurts urgent search for stem cell donors

what goes through your mind when you hear this diagnosis?

on top of the blood transfusions, are there other treatments for this condition?

what drove you to start your own foundation?

when did you find out that tanner was going to receive a stem cell donation?

what was that like, when you heard that you could go ahead with this transplant?

how are you coping through all of this?

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sideroblastic anemia: 28 days post-transplant and waiting

"they told us the plan and the official transplant date. that was surreal. i couldn't believe what i was hearing."

what was tanner was diagnosed with?

how did you find out about tanner’s condition?

related stories

juvenile myelomonocytic leukemia highlights need for more diversity in stem cell donors

lack of diversity hurts urgent search for stem cell donors

myths around stem cell donation are costing lives

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what goes through your mind when you hear this diagnosis?

on top of the blood transfusions, are there other treatments for this condition?

what drove you to start your own foundation?

advertisement

when did you find out that tanner was going to receive a stem cell donation?

advertisement

what was that like, when you heard that you could go ahead with this transplant?

how are you coping through all of this?

advertisement

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