06 June 2012

We have a diagnosis


Caleb has something called Aplastic Anemia.  His specific case is considered severe.  Basically, his bone marrow has stopped producing new blood cells, which has cause him to look pale and have an extremely low blood count.  On the scale the doctors use to measure (and I don’t know what the numbers represent), out of 100, anything below 25 is considered severe…and Caleb’s number is 5.

The treatment of choice for this condition is a bone marrow transplant from a matching family member…meaning one of his three siblings.  All of our children (including Caleb) had their cheeks swabbed this morning and those cell samples will be sent to a lab on the mainland for processing.  Each sibling has a 25% chance of being a match.  Darwin and I were also swabbed, but we will not be a match to him since we each only contributed 50% of his cell makeup.  Our cells will be used to find identifying markers.  This treatment usually “cures” the person, and they will be in remission.

If one of his siblings is not a match, the second treatment choice is a medication therapy.  They will give him medications that will take his immune system down to zero, and then restart it…kind of like rebooting his immune system.  This system is usually effective, but some patients will still require a bone marrow transplant in the future.

The third treatment of choice is having a bone marrow donor to be matched from a bone marrow registry and having a non-relative bone marrow transplant.  I do not fully understand why this is the last resort option, but this is the order I was told treatment would follow, if needed.

For now, Caleb has a very weak immune system and will not be seen in any large gatherings.  He will have to wear a mask if he absolutely needs to be in an indoor public place and he cannot have any visitors who are sick, or might be sick, or have germs…or cooties… ;)  If his temperature is elevated even slightly, he will need to be taken straight to the hospital.  He cannot eat any fresh fruits or vegetables, only cooked, processed, or frozen kind, and he cannot eat anything that may have been sitting out…like at a potluck.  He also cannot eat out at restaurants.  Home cooked or preserved food only until his immune system is a little stronger.  He is not allowed to participate in any “dangerous” or contact type activities. 

Caleb will be going through some difficult procedures in the future, including another blood transfusion next week, having a semi-permanent IV type catheter placed in his chest, and a possible bone marrow transplant.  His treatment plan is expected to last about a year (including follow-up treatments) and there is a small possibility we would have to go to the mainland to have these treatments done…meaning we be medically pcs’ing.  If you want us to stay here…which we think would be best for now…pray for his treatments to be available here. =)

That is all I have for now… and I will work on getting the other updates up on the blog later.  Right now I need to pay attention to my other kids. =)  

10 comments:

Loren Bettridge said...

He is in our thoughts and prayers, along with the rest of your family. Caleb is a strong kid, he couldn't have a more supportive family to help him through this.

AlwaysJen said...

I'm so sorry to hear about Caleb. You guys are in my thoughts and I hope that everything works out well. He's a great kid with a great family. Take care!

Heather said...

When I was praying for Caleb this morning I realized that since Heavenly Father knows the beginning from the end, then if it is the right treatment then many years ago a match was already prepared for Caleb with a sibling. I hope and pray that is the answer.
Not that you are even thinking about school yet, but since you are probably looking at homeschool for Caleb at least over the next year please call me if I can help answer questions. We have been working out a lot of kinks here that may be helpful to pass on advice wise. If you want the help.
Love Heather

Cory Strasser said...

We will keep you guys in our prayers.

Krista said...

Prayers for Caleb and your family. I hope one of the kids is a match! {hugs}

Tannis said...

wow, things can change so quickly, we will be thinking of and praying for him, and your family....keeps us updated!

emfawcett said...

Our family's thoughts and prayers are with Caleb and your family.

Unknown said...

Praying daily for you all.....

Sandy said...

Been thinking about you. You are all in our prayers. We'll be keeping up on the latest news.
Sandy

Lauren said...

Oy! This must have been the reason I stumbled on Jen's blog to stumble on yours and check up on you guys. I will be keeping your family and Caleb in my thoughts.

Lauren (From Mrs. Samuelson's class on Maui!) :)