Tuesday, January 21, 2020
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Riley’s Story (Autoimmune Hemolytic Anemia)

If I ever had any doubts about whether God truly existed or if he really heard my cries, those were all erased the day Riley was diagnosed. I witnessed the healing hand of God. Next week we celebrate four years of LIFE with Riley that wasn’t promised to us. I’ve been asked before if this story is made up. Trust me, I WISH! Riley was diagnosed on October 28, 2006 with a rare blood disorder. There is no cure. She had a hemoglobin level of 2.9 and near heart failure. In the past four years, Riley has underwent surgery, chemotherapy, blood transfusions, medications, tests and numerous hospital stays. We’ve been told by doctors that ‘medically speaking’, she shouldn’t be alive. She IS and God has given her one heck of a testimony along the way!

I have seen many things in the past four years since Riley’s diagnosis. Most of them have been while walking the road we are on. I have watched my daughter fight to overcome so much, beating the odds, SURVIVING, fighting back from setbacks and complications. She is my inspiration! Being on this journey has been a true test of faith. It’s not always easy to trust when you are afraid. You want so badly to have control of the situation and force the outcome you want.

I can still remember every detail of that day. I will be forever haunted by the image of Riley laying in a hospital bed with tubes and machines all around her. I remember the look on the doctors face when he had to tell us that he didn’t think that she would make it through the night and the shock on his face when she did. To this day, I still can’t look him in the eye. I remember the kind words from a chaplin who was sent in our room to ‘prepare’ us for our daughters death. I remember the fear and confusion. I remember being told that if a blood transfusion didn’t begin to work on Riley that there was no hope for survival. I remember the anger. I remember the rocking chair in Riley’s ICU room where I spent many hours watching her sleep and begging God to let me take her place. I remember the empty feeling.

Have I questioned God’s purpose? Yes. Have I been angry with God? Yes. But even at the darkest of times when I have felt alone, God has been there. I may not have felt it at the time, but looking back, I know that it was God who got us through the tough times and still gets us through those times today. I went through a period of complete bitterness. I felt that as a Mom, I had let my daughter down. I couldn’t fix the ‘boo boo’ with a kiss or protect her from fear or pain. I had no control of the situation. I questioned God as to why he would allow a child, MY child to go through so much pain and sickness. Instead of praying, I argued. I wouldn’t go around other Mom’s who had ‘healthy’ children. I grew more bitter when other people would boast and brag on how blessed they were. I distanced myself and wrapped myself around the negative, never looking for the ‘good’ in Riley’s situation. To me, nothing good could come out of a situation where my daughter was having to fight for her life. It just didn’t seem fair!

But, you know what? Good DID come from Riley’s situation. We have been taught life lessons that can’t be found in text books or taught in a classroom. I have learned to be grateful, truly grateful for the little things. Not a day with her is taken for granted! I get overly emotional on the first day of a new school year because not only is Riley growing up, she’s beginning a new chapter in her life. One that I’ve feared we wouldn’t get to see. I cry each time Riley reaches a new milestone, rather it be losing her first baby tooth, learning her first cheer or getting a new ‘big girl’ haircut. So when I randomly have emotional breakdowns, bare with me 🙂 I don’t take birthdays very lightly because I know that every year is a gift. God’s gift. God had every right to tell us ‘no’ when we prayed for him not to take Riley. Instead, he has entrusted us to raise her and allowed us to witness HIM through the life of our child. For me, there is no greater honor! Am I overly protective? You better believe it! Do I worry alot? Of course (I’m a Mom) and because we know that just because she may look okay on the outside, doesn’t mean that everything is okay on the inside. We are never guaranteed that tomorrow we won’t be back to where we were four years ago and honestly, it scares me. This disease is rare and we know that she can relapse at any time, but I also know that God knows what’s in store for Riley long before we do.

You can ask Riley about angels and she’ll tell you she sees them. I get chill bumps when she describes how beautiful they are in great detail. You can ask Riley where she was when Mom and Dad were at her bedside those first few critical nights in the hospital and she’ll tell you she was being rocked by Jesus in a rocking chair. I wasn’t allowed to hold her, but she was being held. Some may call her (and me) crazy. I believe her with all of my heart. I believe that she has witnessed and seen things that only others can imagine. I know that even though her body isn’t healed completely from disease, that God has helped heal me as a christian, a wife, a mother and so many more can say the same. My daughter has taught me more then I could ever have taught her about life. I believe she has been given insight and wisdom far beyond what some can comprehend. I believe God has a plan for my Riley!

Tiffany
Submitted 3-22-11

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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14 comments

  1. I have tears streaming down my cheeks and goosebumps after reading your story. What an amazing testimony! Tiffany, I would love for you to share your story on my blog! Please email me at anewkindofnormal at gmail dot com if you are interested!

  2. Gosh I’d love to chat with you. Felt like I was reading a page out of my own book. My daughter Honor was diagnosed with retinoblastoma. She lost her right eye. She just finished chemo and is doing well. She’s not even 2 yet..kids aren’t supposed to get cancer??!!

    • I’d love to chat too! It’s always nice having someone who can ‘relate’. I’ve lost many friends with ‘healthy’ children who just don’t understand where I’m coming from or why I’m overly protective. My Riley will be 7 in July and is now beginning to question why she is sick. It breaks my heart. Hope to hear from you soon!

  3. I love everything you said and God Bless You Both You Give me more Hope to conquer my own decease !!!;D

  4. Kathleen Beauchemin

    Such a heartbreaking story. I will keep u & your family, exspecialy Riley in my prayers. As a mom, I know how u feel. I almost lost my son Jason at birth. The Lord heard my prayers! He’s 1/2 of a twin. Thank God he’s celebrating his 17tth birthdat 2 day. May our Lord shine upon u, you’re doing a great job! He will heal your daughter, I can feel it. God bless u & your family, through this tough time.

  5. My five year old son, Caden, was diagnosed with this disease in March of this year (2011), but had his first flare up on Halloween of last year. Luckily he has not had such a severe case of AIHA, but I feel the pain and helplessness of not being able to make it all go away. We have had a five day hospital stay for an IVIG treatment, months of steroids and twice weekly blood tests and now a cardiologist that is treating high blood pressure that resulted from the steroid use. We are now faced with a treatment of Rutuxin sometime this summer that will suppress his immune system for months. It seems to be so rare, it makes me feel alone and terrified all the time. Thank you so much for sharing your inspirational story. It means the world to me. If you would like to keep in touch that would be great!

    • Melissa, perhaps we could share experiences? My beautiful 3 year old son was also diagnosed in April 2011 with AIHA following a virus. This has completely devastated our lives. Following 5 days in hospital where they didn’t know what was wrong with him, a transfusion and steroids, he improved but then had a devastating relapse when he came off the steroids. We have had such a struggle with doctors and no one understands the condition and it started so suddenly. He is back on steroids and we have found a decent doctor finally. We live in London, UK and really would like to hear from other families going through this illness. I am close to tears most of the time.

    • I’d love to keep in touch! It’s nice to have someone who understands what you’re going through. Riley sees a cardiologist too, but she sees him for a heart murmur. The murmur is from the anemia itself. Riley’s chemo treatment was Rutuxin also. She had a severe reaction from the chemotherapy and her immune system depleted. We spent 3 weeks in a ‘bubble’ in ICU. Although her immune system has greatly improved, it will never be 100%. She catches everything at school and a simple sickness (like a cold) usually has to be treated with a powerful antibiotic. HUGS to both of you! It has been a constant struggle and battle for all of us. Riley is in the 2nd grade and her body struggles to ‘keep up’ with other children. She required a nap daily to function without having complete meltdowns. Having someone you love with an invisible illness is never easy. I pray for a cure for these little ones!

    • It was good to hear from you, Emma and Tiffany! We finished our four rounds of Rituxin last week. He got through it ok, thankfully, but I am terrified everytime he gets on the bus with all of the germs that will soon surround him… I am debating if he should be at school at all. The “bubble” doesn’t seem like such a bad idea some days 🙂 I am a teacher and could easily home school him, but I don’t want to take him away from his childhood. He loves going to school and being involved in everything possible. We have consulted with the children’s hospital in Kansas City, they agreed with the protocol that our oncologist/hemotologist is following. His numbers are ok, but not great. The doctor said it could take several weeks to see the full effect… we shall see. Your children are in our thoughts and prayers! Keep in touch!

      • I’ve only just seen your replies. We are keeping Louis at home for now and out of school but as you say Melissa, it isn’t the academics but the lack of social interaction that worries us. We are trying to wean him off the steroids but the antibodies are still there and we are worried about another relapse. Has the Rituxin (is that the same as Rituximab?) worked or made a difference? How are Caden and Riley doing at the moment? Love to you both. Are either of you on facebook? x

        • Well… we completed the rituxin (and I think it is the same, but not positive??) We got through the treatments just fine. Unfortunately, we haven’t seen much improvement in the blood tests. We are now in a holding pattern of weekly blood tests. The good news is, he seems to be feeling good and is enjoying school. Halloween was wonderful, watching both the kids enjoying themselves! I am so thankful for every moment! I am on facebook and would love to see you on there! You both and your families are always on my mind! Blessings and good wishes,
          Melissa Wait

          • It is so good to hear that Caden is at school and well especially as last Halloween was so traumatic for you all. We are dropping Louis down to 2.5mg of steroids on Friday but I am very worried because his hb is only 12.6 and it was over 13 a couple of weeks ago but the Consultant wants to continue to drop the meds. I am praying that he will start school in January but we just don’t know. It is so hard expalining his illness to people too, they just don’t understand it. So the rituxin didn’t change his results? is the DAT test still positive? I tried to find you on facebook but I couldn’t. My name on facebook is Emma Sandler James.

  6. My cousin has the rarest form of this disease (he has both warm and cold agglutinins)…he is a 32 year old single father of three, and we have started to put together fundraising efforts to help cover his rising medical costs. Is there a ribbon associated with this illness?? We would like to be able to show our support to all of the brave families who are living with someone who has HA.

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