No surgery

Kylee ended up being scoped from the top down but they saw nothing that would actively bleeding. She had a breathing tube/vent placed on Friday as well as a chest tube to drain the fluid around her lungs and a NG tube placed to get all the yuckys out of her belly. She has been able to go down on the vent settings a little but usually ends back up. She is also getting some medicine to help get the fluid off her body. She is probably about twice the size she was before she went in. They really are not finding much wrong with her other then the flu (type A...yes she got a flu shot). No reason for the bleeding or how she could have gone from being so healthy on Monday (we had a full day of appts in Milwaukee and all said she looked great) to so sick and in ICU the next day. Sounds like we have a long road a head of us but we will take it one hour at a time. Thank you everyone for all you prayers.

Surgery

Kylee has just continued to get worse. She started bleeding again. Is having a lot of issues with breathing and pain. They have decided to place a breathing tube to help her with her breathing. They are also taking her down to scope her and will have surgeons on standy in case they would need to do surgery. It is very risky to put her thru this right now however they feel she will not get better if they don't go in and fix whatever is going on. I will try to post after the procedure/surgery is done.

ICU

ICU

Just wanted to post a quick note that Kylee is in ICU in Milwaukee. She was air lifter there this morning. I found her in her bed covered in blood and she had blooding coming out every end. They are not sure where the bleeding was coming from but it has stopped. They now think she is septic. I will try to keep everyone posted.

Make A Wish

Make A Wish

So now that Kylee is done with her cancer treatment the oncology department made a recommendation for Kylee to receive a Make A Wish. The couple came out and saw us on Thursday night to talk about Kylee's wish. She is wishing for a 3 season room and a outdoor swing. How the process works is that they meet with you ask you different questions and then they take it back to the Make A Wish office and they decide what they are going to do. So we are very excited to find out what Kylee's wish will be. We did however say not trip, swimming pool or pet. Those are all things we would not enjoy or don't have the extra time for right now. So you will have to stay posted to see what Kylee's wish will be.

MRI

Kylee had a MRI done a few weeks ago because she was having really bad seizures. Her worse seizures yet. We had to give her the emergency seizure medicine which we have never had to give to her before. Nothing new showed up on the MRI which is good but the way the Dr (someone who has never seen us before) told me was not so good. He told me nothing changed on Kylee's MRI however we need to decide what we are going to do as Kylee's tumor will probably keep growing and will only make her seizures worse and we will just have to keep increasing her seizure medicine. He told us we should think about palliative care as well as DNR (do not resuscitate) for Kylee. This was a shocker to me. I then asked for all Kylee's MRI results as no one had told me anything about a tumor. So what this Dr was talking about is Kylee has a "growth" that formed from her having a brain bleed when she had high BP and low platelets. It has not gotten any bigger in the last few months but they can not know if it is cancerous unless they do a biopsy on it which since Kylee can not do any more treatment for cancer there is no point in finding out if it is cancerous. The fact that it has not grown is a good sign. We also found out she a a cyst on her penial gland which may explain why she has been so tired. The pineal gland controls your melatonin which deals with your sleep. So tomorrow we are heading to Milwaukee to see several Dr's and ask lots of questions and talk about the palliative care and the DNR. The first few weeks of thinking about all that made me very emotional and I cried alot but now I feel stronger about things and am ready to deal with it.

School

Kylee is back and school and enjoying it. I had a very difficult time letting her go back to school. I felt like she had been thru so much and I had come so close to loosing her that I didn't want to let her go. I just wanted to keep her home and close to me an not share her with anyone. I talked with the school and we decided it was in Kylee's best interest to go back and so I let her go and I must say it was one of my best decisions. Kylee loves school. Almost every day her note from school says how happy she was and how well she did. They send me home lots of pictures and she is smiling and laughing in all of them and playing with her friends. I love it and it makes me feel so much better about letting her go. I love seeing Kylee happy and that is all I can ask for.

**Sorry I haven't updated much lately....things have been a little busy with the kids in school, Collin wrestling and me back at work (for now...my work is getting rid of my department).

The Best Christmas Present

The Best Christmas Present

We had Kylee's oncology appointment today and it was filled with many emotions. Kylee got her beads of courage today. It is a necklace with a bead for everything she has been thru (she gets one bead for radiation, losing her hair, every poke she has gotten, every transfusion and the list goes on). Her MRI results were normal. For the type of cancer Kylee has they usually do MRI's every 3 months for the next year to year and a half but because if Kylee's tumor was to return we wouldn't be able to do anything about it (she can't handle radiation or chemo) we have decided not to do the MRI every 3 months unless she is showing symptoms of it being back. Her IV was stopped today. Her needle was removed from her port (she always has a needle in her chest in case she needs labs or transfusion so they don't have to poke her every time). Her port will be removed in January and all of her counts have doubled which means her bone marrow is starting to work. They said her bone marrow will always be sensitive like when she gets sick and things so they will just have to keep an eye on it during those times. Since Kylee is now done with her treatment for cancer we got to ring the bell. A bunch of her nurses and Dr's and office people all stood around us while I read the plaque and then Kylee and I rang the bell....I cried like a baby. I was so full of emotions. So happy that she is doing great and we are done...sad that our odds were decreased from 85% to 50% and just in complete shock...it feels like the past six months has just been a bad dream and that someone just woke me up today and it is over. Kylee is going to be heading back to school this week and we have no scheduled trips to Milwaukee until after the Holidays. I am so excited......What a great early Birthday present for Kylee and a early Christmas present for Jason and I....who could ask for more.

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.