Once upon a time there was a cute little 2 year old red head named Chloe…
Chloe has Hereditary Spherocytosis she inherited from me. My family has a long history of this blood disorder. My grandmother, mother, aunt, myself, my sister, my 2 cousins and now mine and my sister’s children. The 50/50 chance of inheriting the gene doesn’t seem to apply to us. The main problem with this disorder is the enlargement of the spleen due to increased activity. In the past, we have had our spleens removed around the age of 5. These days they like to put the surgery off as long as possible to keep the spleen functioning to help you fight off childhood infections.
Chloe (and now Carlee) are seen at St. Jude’s every 6 months. They monitor the anemia and size of the spleen. During Chloe’s latest visit at the beginning of the month, the doctor noticed a drastic increase in the size of her spleen. We went for an ultrasound of her spleen and gallbladder. A few weeks ago I received a phone call with the results of the ultrasound. They want to go ahead and meet with Mitchell and I to discuss removing her gallbladder and doing a partial splenectomy. I was not expecting this news.
Chloe’s spleen is swollen to 500mL. Regardless if you know how big a spleen is supposed to be, picture half a one liter coke bottle. That is how big her spleen is inside her little 32lb 2 year old body. She also has gallbladder sludge. The sludge hasn’t turned into gallstones yet, but they know it’s coming and would like to remove the gallbladder before she starts hurting.
Today Mitchell and I met with the surgeon and the hematologist and discussed options, risks, benefits and general information about the surgery. We have decided to go forward with the surgery. They will be laparoscopicly removing her spleen and gallbladder on March 1st. We will go in on the 28th of February for Pre-op where she will receive a blood transfusion that night to prep her for surgery. On the 28th, they will not only “physically” prep her for surgery, but emotionally also. They are going to roll play with dolls, said something about Mitchell wearing a bunny suit (not kidding, can’t wait to see this!) and basically walking her baby doll through her surgery to help her understand. She should be able to go home that Thursday or Friday. She will then have an ultrasound follow up around a week after her surgery and will be dismissed to go back to the sitter. Amazing how short the recovery is!
This is probably going to be way scarier for me than it will be for her. There are two things that comfort me the most, one is that she is under the care of the chief of surgery of St. Jude hospital and the head of Hematology at St. Jude hospital. I couldn’t think of better hands to be working on my daughter. The other is when I had my surgery at the age of 5, I have nothing but fond memories of it. They are so wonderful with the kids and turn what could be a scary situation into an actual happy experience.
So please keep us in your thoughts and prayers while we go through the next few weeks.