Sam's Story

Sam is a smiley and social 18 month old battling severe aplastic anemia. Until a few months ago, she loved going to the park, her little gym classes, and following her big brother around everywhere she could. Although not the easiest of babies, in general, there had never been major concerns about her overall health. She had reflux and some feeding issues, but she was growing well, and these were improving with time just as her older brother's had.

    This all changed on February 1st when Sam's mom , dad, and brother  took her to the emergency room for what they thought was a simple virus and dehydration. Sam's mom briefly mentioned she had been bruising easily on her legs but what toddler doesn't with hard wood floors? Within a half hour of being admitted, the er attending was talking to Sam's mom about leukemia or a blood disease causing bone marrow failure. They were both whisked to the oncology/ hematology floor where Sam recieved transfusion after transfusion of blood that first night. The next day she had a bone marrow biopsy and was surgically given a picc central line in her arm. Over the next five days in the hospital the family learned that Sam did not have leukemia which at first seemed like a relief until they started learning more about leukemia's "wicked stepsister," severe aplastic anemia.

      Severe aplastic anemia is a life threatening rare blood disorder typically seen in young adults. The disease causes your bone marrow to fail and all three of your major blood cell lines are impacted. Red for oxygen, white for immunity, and platelets for clotting. To be "severe" you have to have less than 25% cellularity from a bone marrow biopsy and an ANC below 1000. Sam has less than 1% cellularity and an ANC of 0. Because of this , she is technically considered " super severe" but the terminology and classification becomes less important.

 SAA ( severe aplastic anemia) is less researched than most cancers and thus treatments are not yet as effective . The two treatment options are chemo like immunosuppressive therapy which only has a 70% success rate in response (and 1/3 of these successes then relapse within a year), or bone marrow transplant. Most people don't  have a perfect matched sibling donor but this is where Sammi hit the jackpot! Her older brother is a 10/10 HLA match! This gives Sammi the only real shot for a cure and a normal life someday.

Getting to transplant though has been no easy road. Sams ANC (measure of immunity) has been so low (it is now 0), that she has been hospitalized almost weekly for fevers or any sign of infection. She has recieved platelet transfusions (needed for clotting) bi weekly and twice needed er care for internal bleeding due to such low counts. She receives bi weekly red blood transfusions to make sure her body has enough oxygen and her heart is not working too hard. She is not allowed in public at any time except to go to the hospital clinic, can not eat fresh fruit or vegetables , food prepared anywhere but at home , and can only  have reverse osmosis bottled water because of possible bacterial infections. She has stopped eating altogether and weighs less at 18  months than she did at 15 months. She was surgically given a peg feeding tube that she now receives nutrition and a slew of medications through up to five times per day. She has fissures and "open sores" on her bottom because her body does not have any working immune system to handle the basic bacteria that is in all of our digestive tracts on a daily basis. For this, she requires morphine almost every six hours, can not sit, and screams in pain shaking whenever she goes to the bathroom. It has been heartbreaking to see her deteriorate over the last six weeks while waiting for essential test results but those are finally here and we are moving ahead!

        As of now, Sam and her mom will check into the hospital April 3rd to start the transplant process. This involves 7 days of chemotherapy. Then it is harvest or transplant day where Kaeden will have a bone marrow abstraction procedure under general anesthesia. This is no walk in the park either but Sam's brother is one of the bravest little guys out there! From there, Sam  and her mom must remain in the hospital on isolation ( yep the same room) anywhere from 30 to 60 days. It all depends on how quickly and successfully engraftment occurs. When Sams body starts making its own cells and these reach safe levels, then she can return home (again under strict guidelines, no public places , tons of meds etc ). Typically these restrictions are lifted and risks significantly decline at one year post transplant. There will be more pain and challenge along the way battling thru transplant but its Sam's best shot so we aren't looking back!

        Please visit this site as often as you 'd like to see pictures or hear updates on Sam's progress. This has been a difficult time for our family and we've struggled with how much to share but in the end we want all those dear to us to be able to follow our battle with this and spread awareness on a small scale about this disease. So please feel free to leave us messages and PLEASE consider joining the national donor registry!  You could be a life saving hero too!