10 Things I Wish I Knew Before My Son's Bone Marrow Transplant

Four years ago last November, we began the journey with a bone marrow transplant.  Our son, then six, was diagnosed with a terminal immune deficiency condition known as a stat 1 deficiency that gave him only years left to live. A bone marrow transplant was his only option, but it had never been done before to treat his condition. Unfortunately, it hasn’t been the smoothest journey. Here are a few things I wish I knew before we headed down the road to a bone marrow transplant.

1) It will be very long road to recovery – very long. When the doctors tell you to be patient, because it will take time for the immune system to rebuild, they are right. It is difficult to process how long this could take before you begin, but try to remember that it takes a long time.

2) It is one of the most dangerous procedures to undergo. Rebuilding an immune system is dangerous because it takes time. While you are waiting for the new system to regrow, you are at a high risk for infection. Imagine that your immune system is like an army, and you have just fired all of your soldiers. Now you are waiting for new soldiers to take over, but they have to multiply. They can only do that at a certain speed. If it’s too quick, the host’s body rejects the progress; if it’s too slow, the risk of infection gets higher. Danger loomed in every person, every new item, every procedure that followed. Don’t be surprised if you find yourself becoming weary of public spaces because you don’t want to get sick. If you are sick, then you can’t visit your loved one. Make sure to take care of yourself.

3) Try to keep the patient moving, even a little bit, everyday. Keeping them up and on their feet on a regular basis could change their physical state as the recovery progresses. Hopefully, this can help avoid the need for long-term physiotherapy.

4) Find time daily (or at least every other day) to talk to family and friends either over the phone or via video chat.  Keeping in touch with the outside world is a good distraction, and will help the patient feel less isolated.

5) Remember that your nurses are your advocates. They are there for you, to bring the concerns of the patient to the medical team. They are your first line of contact, a wealth of information, and an amazing resource at your doorway.

6) Ask lots of questions. If you are not sure about a medication or a procedure, ask the nurses, research it on the internet, or go to the hospital library. Try to have an understanding of what is happening to your loved one, and keep note of how it went or how they reacted. I make sure to do this especially with medications.

7) Remember to breathe, eat, and take a moment to be alone. While caring for a loved one going through a transplant, you will need to be healthy, alert and ready for any challenge. If you aren’t eating, sleeping or resting your mind, you will wear out long before the end.

8) It’s OK to freak out or cry. This is an emotional journey. It is OK to express your feelings. Find a quiet spot where you can take a few minutes to let them out.

9) Remember, you are not alone in your journey. There are others like us who have been down this road too. Search for bone marrow transplant survivor groups on the Internet, look for us on Facebook or connect through the blogs. Ask around for connections to others who have had similar conditions or treatments. We are around and we are standing behind you silently — sending you strength, courage, and the confidence to move forward.

10) You can do this!

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