MRI and IEP

MRI and Update

Sorry it has been a while since I have posted. Life has been crazy as usual. We are still waiting for Kylee's bone marrow to kick in. Until it does we continue to have labs done twice a week and platelets and blood transfusions. One nice thing is that Oncology has decided we can have our transfusions done in Neenah (about 30 minutes from our home) instead of Milwaukee (about 2 hours from home). This safes us a lot of time and stress. We have had a few bad weeks with Kylee but things are better. She was in a lot of pain and needed medicine every 3-4 hours. She was also throwing up a lot and having lots of seizures and increase in her blood pressure. She had a CT scan and it came back as she was having some swelling in her brain as well as several "new spots" that were not on her previous CT scan. After they reviewed her last MRI with her CT scan they think she may be having some bleeding in her brain from her high BP's and low platelets so we are having to keep a close eye on her BP's and keep her platelets high. They have scheduled her for a new MRI to see what the new spots are and if she is having some bleeding. It was scheduled for last week but of course she got sick so we are now having it on December 2nd. She has been feeling better so we are assuming the swelling the brain has gone done. So now we just wait and see.

IEP

Kylee's IEP for school is on Monday. She hasn't been to school yet this year with everything that has been going on. The first part of school we were pretty much living in Milwaukee so it wasn't possible. Now that we are not able to go any further in treatment we are home more but now I am worried about cold and flu season and with her bone morrow not working she is more at risk for getting sick. So I am so undecided but she really needs therapy so I am going to have to ask about home bound services or see if we can do outpatient therapy if we don't send her back to school yet.

Thank you everyone for all your prayers and support. We could never thank everyone enough.

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.