So we got somewhat bad news yesterday. We will not be coming home this week. Yesterday Katlyn's numbers dropped a bit so her doctor examined her blood smear himself and by looking at her blood it still looks the same as it did when she first got her and he examined it. He told us the safe thing to do would be to do a bone marrow aspiration on Katlyn to make sure there isn't any known problems. They believe that something is going on with Katlyn but it's unclear what that is because they haven't got it all figured out yet. So they will do the bone marrow aspiration like they have a few times already and haven't found any problems. The thing is since Katlyn's gene therapy, her bone marrow should be different. So if they don't find any known problem they will be giving her an injection of GCSF, which will stimulate Katlyn's bone marrow to produce a greater number of cells. They hope by doing this they will give Katlyn a boost and as she starts to fall and level out, she'll stop dropping at a higher number. She has received GCSF before and the first couple of times it seemed to work great, but every time they gave it to her it seemed as though she would drop faster and wouldn't settle at a higher number.
They don't expect to see any known abnormalities with her bone marrow but they are trying to keep Katlyn's safety in mind. If there was a problem and they gave her the GCSF, there could be consequences. So that all said and done, if there are no problems and she ends up getting the G, we could be going home next week.
This is very frustrating for us. Throughout Katlyn's diagnosis this keeps happening to us over and over again. It is part of the journey but it is so hard because we just don't know when it's safe to get happy and excited about something. If it don't rain it pours as they say. The great news is Katlyn is still doing fantastic. She had her research blood drawn yesterday as well, so probably by the time we're ready to go we should know what her ada level is.
It's so hard to say why Katlyn is taking so long to climb back up. First of all, I'm not a doctor or a scientist, so I have no idea other than what the doctors tell me, and even they aren't completely sure. She has two doctors and it seems like they both have their own ideas about whats going on with Katlyn. The one with whom I spoke with yesterday is still sticking with his theory all along. He thinks that because Katlyn received such a small number of cells that things are going to take time. They had no choice but to give her the small number of cells because that was all they had collected.
So Katlyn is neutrophenic again, meaning her neutrophil count is below 500. I'm so glad we never took off our isolation gowns, gloves etc. No matter what anyone says, we will not take them off until we know that Katlyn is safe. She is just too close to that 500 mark.
So we're not really sure when it is that we'll be able to go back to Canada. It would be nice so that we can actually start getting things ready for Katlyn to go home so that she can have a great quality of life. It seems harder and harder everyday being stuck in that room. She should be able to go outside like a normal child. It really saddens me that she has been robbed of all that so far in her life. I really would do anything to be able to allow her to live like a normal child and take all the sickness away. It's so frustrating because we are completely powerless. We are doing all that we can do to make Katlyn's quality of life great, but we can only work within these restrictions.
Hopefully some day soon our girl will be able to venture outside and be able to experience all the things she deserves so much. I love Katlyn so much. I'm so proud of her for being such a strong person through all of this. She has been through so much and she just keeps trucking. She really is the bravest person I have ever known. I love you so much Katlyn.
