The Power of God

Michael's hemoglobin (Hg) has been slowly increasing since Christmas, so he is out of the woods for now.

Before Christmas we had a scary call when hematology called letting us know that Michael's hemoglobin was significantly low possibly needing a blood transfusion. We were worried about another hospitalization over Christmas. After talking with both hematology and rhematology, we found out Michael should not receive a blood transfusion unless it is necessary to save his life. The reason is that Michael is a difficult match because of the many antibodies he has in his blood stream; this puts him at a higher risk for a transfusion reaction. If Michael received blood and had a transfusion reaction and later needed a kidney transplant, it would increase difficulty matching him for a kidney as well as increase the risk of rejection and make it much more difficult. Because Michael is still so young at 13 with already significant problems in his kidneys, any treatment as significant as a kidney transplant needs to be saved in case he really needs it later.

This means that Michael will have to live with the anemia unless it gets really bad. It is a matter of weighing the risks and balancing what he needs and what medical conditions are more manageable. Functioning kidneys are really important. Without functioning kidneys, Michael would have to be on regular dialysis. Dialysis on a possibly biweekly to daily basis is more disruptive than living with chronic anemia. Michael's body makes antibodies that attack his red blood cells and destroy them faster than his body can make them as well as antibodies against his red blood cells and platelets, so anemia and its affects is something he lives with daily.

Autoimmune Hemolytic Anemia can make a person feel fatigued, tired and even exhausted because there are not enough red blood cells to get oxygen to the body making your heart work harder to get blood where it needs to go. Other symptoms can include shortness of breath, dizziness (when standing up), headache, pale nail beds or gums, chest pain, and even cold hands or feet and pale skin. If the heart has to work too hard, arrhythmias, an enlarged heart, heart murmers and even heart failure can result. When anemia is really severe, some people will look yellow because of the red blood cells that release hemoglobin into the blood when those cells die. Pain in the abdominal area, an enlarged spleen (which fights off infections and filters the blood from dead or damaged cells), and gallstones can also occur which can be very painful.

A wheelchair is now a necessity to help Michael conserve his strength, to help Michael become more independent (especially as a teenager), to allow Michael to sit and rest when he needs to and still be able to get out and about. I have been struggling for so many months now to get Michael a wheelchair because we cannot afford it that I have been praying just for something other than our stroller (which he is clearly to big for). At Michael's physical therapy, I was very amazed to hear the therapist is trying to get Michael an electric wheelchair (not just a manuel one). I would love it if Michael could manuever himself around the grocery store or mall without me having to push him. It certainly would make getting out and going places easier for him instead of feeling limited like he is right now about where he could go. That would be a dream for Michael that until today we had not even thought of or dreamed of. Please keep this in your prayers for him.

Michael desperately wants to feel strong, feel independent, and to be capable on his own without mom's help as every teenager does. For him, it clearly is much more of a struggle with things that we take for granted like opening a can of food and walking down the aisle at Target. Even opening a can of soda causes pain in Michael's fingers, and Michael smiled when we were able to give him his own small plastic Tupperware soda can opener tool that lifts the tab up for him. He feels like a baby when he can't and smiles often to cover up the pain, fatigue and disappointment he feels. Michael tries hard to be strong and will often pretend he is fine when he feels lousy. I'm his mom though, and I can tell. We are trying hard to rally for the services and things that he needs and find creative ways to help Michael, and pray for things like a shower chair and rails to help him in and out of the tub without falling (which has happened). I wish we had a bigger house with rails and space for Michael to move around where we didn't have to worry so much about falling and hitting furniture like with his seizures. I just don't want Michael to get hurt again, especially if there was a way to avoid it; the means is the biggest problem, which we don't have unfortunately.

The truth is Michael has so many diseases and illnesses that his life is at risk every single day. Every day with Michael is a gift from God. Every day that Michael feels well enough to walk is a miracle. Every day with Michael himself is a miracle that he is still here for God's very special purpose. As we just completed Michael's fourth (4th) month of chemotherapy, Michael is a testament to the power of God to help us overcome amazing challenges and obstacles in our life.

God bless you,
Jennifer Richardson RN
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