Back on Track

Lily had her appointment yesterday and I was very surprised to hear that her counts were actually really great! I had so prepared myself to hear that she wasn't going to be able to get chemo that when the Dr. ordered it I was like really? Oh okay. I feel a lot better knowing that she can recover quicker from chemo than we thought. She got a higher dose this time because she recovered fine from the last treatment so I'm going to keep her on the nausea med and Tylenol for headaches. So far Lily is doing great today and eating and playing.

 Next week we go in for another sedation/spinal tap and chemo again. I cant believe that this doesn't even phase me anymore. Its like, been there done that, after doing it 5 weeks in a row. The Dr. gave me a little glimpse of the next phase to come which will start in about a month and it is going to be really tough. More steroids, a planed hospitalization, and lots of different chemos, and going in a couple times a week. She told me to expect low counts and a tired girl. We are thinking after talking to the Dr that it would be best to some what limit visitors and activities during this time so we going to try and get all the fun things done now that we want to do this summer.

 Okay so now the confession portion of my post. The circus was in town over the weekend and we went. :( To everyone else that may seems like a normal fun memory for a 3 year old but for me I just had so much guilt for taking her there. I am normally the mom that takes a million pictures of everything but I couldn't bring myself to take any. Not. A. One. I wanted no evidence that we were there. With all the people and animals I just panicked inside that she was going to get really sick. Part of me justified my guilt with the fact that she is still 3 and deserves to still have some fun and make memories, and the other part of me says that when she is done with all this there will be time for memories; right now she needs to get better. I'm still learning. I'm still learning how to listen to my instincts, let guilt go and enjoy every moment with out worry. I'm learning how let the stress go when we are playing and having fun, and enjoy everyone's laughter. And I'm still learning to be grateful for the health and laughter that Lily still has, but I also know that that could change in an instant. So still we proceed with caution, but I know that I cant feel guilt for giving her fun memories to go along with all the hospital memories. I think I owe her that.

With all the things I am learning about guilt there is one thing that I know for sure. I cant sit here all day and try to find how or why this has happened to Lily. I have been assured over and over again that there was nothing I did, or nothing I could have done to prevent this, and any attempt at trying to find a reason is not going to change anything, and is quite frankly, just not helpful. I have to trust that we are all supposed to learn things from this and that is why this happened. Its not from something I did/didn't do, something I fed her or gave her, or from somewhere I took her to/exposed her to. If I sat here and thought about all of the possible causes I would literally go crazy. I'm not looking for reasons or statistics on anything. If the Dr.s really knew what caused leukemia then they would know how to predict/prevent it from happening, but they don't. That's just something that I cant think about and just a little something that I needed to get off my chest.

Trust is earned, not given

I realize that I haven't given a recent update on Lily. I have been extra worried about her for the last 2 weeks and that makes me worry even more. I keep thinking that we are going to hear bad news and end up staying at the exclusive, invite only hotel, St Lukes Downtown. Last Friday her neutrophils were at 750 which is the lowest number she can have and still get chemo, so we did our 2nd round of chemo. She handles it pretty well especially if I give her Zofran (anti-nausea) and Tylenol before bed. Its actually when she gets her best sleep. Its been 7 days since chemo and she has a pretty good appetite, and is mostly happy and energetic but there's just something there. I can see it in her eyes that shes is uncomfortable and exhausted. I keep a thermometer basically in my hand and check her temperature all the time and no fever thus far.

Since our first initial diagnosis we really have gotten nothing but good news up until starting this phase. I know that this is a pretty intense treatment phase getting 2 chemos at the same time. So far it seems we get chemo, check counts after 10 days, shes neutropenic, so we wait 4 days and then she is better, barely, to do chemo again. Trust me I'm trying to keep a hopeful mind but its hard when her eyes look so sad. We go back in Monday and we will know more then. The plan is to have more chemo so we will pray that her counts are up!

So there is something that I have discovered through all this. Its about Makinlee. When she was born I felt so close to her in a mothers way. Lily was an easy baby and would let anyone feed her and hold her and would snuggle everyone, but Kinners only wanted me. She really didn't want other people trying to take care of her much at all. It was like that until Lily went in the hospital and then I honestly only saw her like 4 or 5 times the whole 8 days, and only for an hour or two each time. I missed her so much and I had so much guilt that I had just dumped her off on other people for a whole week but I knew Lily needed me most. What seemed like a month in the hospital to me must have seemed like a year for Kinners because when we finally did get home she didn't want anything to do with me. Honestly she would cry if I tried to put her to bed but then Jake would and she would go right to sleep. Its like one day we are home and and everything is fine and then next time we are home she doesn't trust me at all. It has taken me up until about 2-3 weeks ago to gain that trust back, for her to really let me back in. Especially this week, is like the first time since, I don't even remember when, that she snuggled me without being asleep. That she hugged me, and called for me, and reached for me. As a mom I expected there would be times when I would feel closer to my girls than others but I never expected to have to earn back an infants trust. It has been an unexpected lesson for me. Even in my most precious relationships, my trust is earned not given.

At this point this cancer journey is far far from over. That makes it very hard to predict, or plan what life will be like in the future. I have no doubt that Lily will kick Leukemia's butt, but what I don't know is at what cost and sacrifices it will take. We have to take everything day by day, hour by hour. We cant make a lot of plans a head of time and that's okay. We are learning, growing, and changing as this process goes on. We still appreciate all the love and support that we get from each of you. its what gets us through, and we feel lucky to have such a great family and community.

Photos courtesy of Tina Weeks, OSM Photography

Warning: rough road ahead, expect delays

Its been almost 2 weeks now since my last update. I don't like coming on here with only bad news but since its been so long I guess I just need to lay it all out. Lily had her first bout of chemo in Phase #3 on May 27th. She needed about 3 days of anti-nausea meds and then seemed to be doing fine. That Sunday however she woke up with a UTI and we ended up taking her in the ER to get treated. She didn't have a fever or anything so the ER didn't draw blood. We were sent home (5 hours later!!!) with some Augmentin and instructions to watch her close. Monday she started to have diarrhea. By Monday evening it was pretty bad. I figured it was from the antibiotics, and since she was still eating and drinking fine, I wasn't too worried. (They always say at MSTI that if she gets diarrhea or is throwing up to call day or night.) At about 8:40 Mon. night the ER called and said that they cultured Lily's urine and found Ecoli and said that the Augmentin wont help, and they called in a different anitbiotic.

Okay let me back up just a little bit. Lily takes Septra (generic for Bactrum, an antibiotic) 2 days a week, every week as a preventive measure to help lower the risk of lung and intestinal bacteria. In the ER they told me that Bactrum is usually the best med to give for this but because she already takes it the bacteria may have developed an immunity to it. They knew that Augmentin wasn't the best thing for it but since its such a strong medication they decided to give it to her hoping that it would knock the UTI out. They did warn me though that there was a chance that it wouldn't help. 

Okay so back to Monday night. I had been watching her very closely with the diarrhea and still no fever but I admit, when the ER called me and said Ecoli I might have gotten just a little worried. I know now that is a pretty common bacteria for UTI but still, with Lily anything can happen. I called MSTI and talked to them and they didn't seem concerned so I just kept her tight under my wing. By Tues night the diarrhea was gone and so were her complaints of UTI. 

I guess I should get used to frequent panic and worry spouts but I don't think I ever will. Now that I know that the worst can happen I cant stop myself from going there often. Outside I may look calm and collected but inside I'm like freaking out! It like 0-60, no warm up. UGH!

Sooo, anyway, Lily is supposed to be getting chemo every 10 days. Since this time day 10 fell on Saturday they moved her appointment to yesterday. We went in and after getting her blood results back we found that Lily is once again neutropenic and we can not do chemo. I'm not completely surprised this time like I was last time but its still SO discouraging. I feel even more helpless than normal when we have to delay treatment. The good thing for Lily, though, is extra recovery time. I can tell everyday she seems to be willing to eat a little bit more and with that comes her energy and attitude. :) So, for now we are keeping her quarantined at home, with her new swimming pool and various art projects. We will go back in on Friday to check blood again and hopefully she will be up high enough that we can do chemo.

Okay so now for my epic confession. I think I also had a day of neutropenia. Not physically in my blood, obviously, but mentally and emotionally. All my emotion fighters were worn out and just gave up. Lily has not been sleeping well. Its not just, 'oh sit here and watch cartoons while I sleep and eventually you will fall asleep,' its like she is crazy, jumping on and off stuff and on me, getting into things, and maintaining this level of energy until 3am. Sunday I was just exhausted after 4 nights of this. I literally couldn't get up. It was too much energy to even breathe. When I was finally forced to get up (by the small one crying in the crib) I just sat on the floor and cried. Anytime Lily said anything I just cried harder. Then the guilt set in. How could I be so selfish and exhausted when the kid with cancer is the one up running around having a party? I'm supposed to be the strong one. The rock. But then the exhaustion set in again and I realized that I didn't have the energy to support even myself. And then the crying started again, and then the guilt, And so goes the cycle. Finally I called my sister and she talked me down. She gave me some excellent advice, one piece being drink more water. I realized that I hadn't really been taking very good care of myself. I couldn't remember when the last time that I drank water was and I hadn't been taking my own medication. I feel like I had hit rock bottom, a place I don't ever want to go again. So I am happy to report that with some much needed support from the hubby and some excellent advice from the sis I was able to get a good nights sleep on Sunday and wake up Monday with a strict schedule for my own pills, a plan to eat healthier and the intention of getting more exercise. (Still working on that one. Anyone have a bike stroller thingy I can hook to the back of my bike so I can pull the kids around?) 

So as this whole process goes on I'm learning that its harder to learn lessons when things are going great. Its in those moments of fear, and worry, and exhaustion that you come out of the fog with some clarity and experience a new life lesson. You hear it all the time, "You cant take care of her, if you don't take of yourself." I've learned that lesson twice now but the first time we were in the hospital and I had the nurses help. This time it was just me and the lesson really sank in. I will start taking better care of myself. Lesson 2. Just like how I look calm and collected out side but inside I'm freaking out, so is Lily. She is still 3 and she has energy and she laughs and plays and sings, but inside she is still sick. Its hard to believe with how good she looks, and I forget (or don't believe) but the blood doesn't lie. Despite her outward appearance, we still have to confine with caution. Wear a mask wherever we go, wash our hands like crazy and use sanitizer, avoid large crowds, and not allow the sickies to come visit, and, hopefully, by Friday we will be ready again to continue on with the plan. Until then friends, stay well!