Our Treatment is Over

Our Treatment is Over

We have been told for about a week now that Dr Jogel wanted to talk to us about Kylee's treatment and that we should prepare ourselves that her treatment is done. Well Kylee ended up in the hospital over the weekend due to mix up in labs (they told them she had MRSA in her blood culture when she didn't). So for two days she got IV antibiotics and one she was allergic too and had to keep getting it. Then the hard copy of the results saying there was a contamination in the culture and not MRSA. The MRSA result was from her ear culture which we knew. So while we were there for all that Dr Jogel had a talk with us. He tried so hard to put it gentle and I had to finally come out and say it for him so he knew I would be ok. Kylee has not yet been able to recover from the radiation. She still needs blood and platelets on a regular basis. So we were going to harvest her stem cells and then give her a small dose of chemo and see how she did. Well her counts have never been high enough to do the stem cell harvest. He said that if we don't do the full round of chemo (9 months) then it doesn't really increase her odds much. He said he just doesn't feel like it is worth it to do a little chemo and put her at such a great risk for the little bit it might help her. So our plan now is to do MRI's every 3 months for the next year and a half. That is the greatest risk of the tumor coming back. After that the risk is slim but it still could come back so we will do MRI's every 6 months until she is 4 years out after that we will just do them once a year. Part of us is sad that treatment is done and we drop her chances from 85% to 50% but the other part of us feels a great relief. We didn't want to put Kylee thru the chemo. We knew how hard it would be for her but yet as parts we felt we needed to do everything we could for Kylee. Now the decision was out of our hands. It will be hard going forward. We are going to have to try really hard not to worry about the what if's and let me tell you that is really hard. I am going to try really really hard not to but please forgive if I do. Part of me just wants to fall apart but the other part of me feels I have to be so strong for everyone else. I'm sure I will have my moment soon and I will pick myself and go forward just like I always do. It will be so hard every 3 months waiting for those results to come back but once they come back and they say things look good it will be a huge weight off my shoulders for 3 more months. On a more positive note hopefully things will start to get back to the way they use to be. Less Dr appointments and hospital stays. Kylee can get back to school and work hard in therapy. I can get back to work and hopefully just have more time together at home as a family. It will probably take a little while for her to get back on track from the radiation but I am looking forward to it.