Lily is in Remission!!

Yay we are so happy to report that Lily is officially in remission! Basically that means that in her blood smear they cant see any visible leukemic cells. They know that there are still some leukemic cells in her blood that they cant see so they sent her blood to Seattle for further testing and the results show that the amount of leukemic cells she still has are within the normal range. This is such good news because since she has responded so well to treatment so far it hugely increases her chances of not just survival but also increases her chance that she will never ever get this again!

She still has over 2 years of treatment to kick this thing for good but we are once again so hopeful that life will some day return to normal. This next phase of treatment is 28 days. She went for a spinal yesterday and 2 rounds of chemo. The next 2 Wed she will go in again for spinals, and then she has a week off. I also will be giving her an oral chemo here at home for the next 28 days.

So far she has been so happy since getting off the steroids. She is really starting to act like the Lily I remember before all this sickness started. I can see the love she has for her sister, and the love Makinlee has for her. They will finally play together and Lily can always make her laugh. Lily is also quite the helper these days. I'm sure that fact that she is doing chores to earn money to buy a kitty purse has nothing to do with the fact that she will do any chore I ask her to do. :) She has also become quite the artist. She loves to paint and color and actually has the attention span to just sit and color for hours.

We truly feel blessed this week. We can not express to everyone how grateful we are to have such amazing people in our lives. There is too many people to thank everyone personally but we are so grateful for all the gifts, and cards, and donations that we have gotten. We know that all the prayers are working and cant thank you all enough. We still have a long road but we are ready to face the challenge with all the support we have. Today is a GREAT day and I know there will be many more to come!

She's Coming Back!

Lily has only been off her steroids for 3 days and already she is returning to her old self. I am feeling so blessed that she is returning so quickly. She still doesn't look like herself but she is laughing and telling jokes and I can finally see her inside there again. She has been helping me around the house again and she will even play with Makinlee! She still asks for snacks a lot but now if I tell her no she doesn't scream for hours if I don't give it to her. (Oh hallelujah) Even over the last few days I have noticed her belly going down and she will walk. She hasn't wanted to walk anywhere for months now so this is kinda huge. Its baby steps and at this point and I am so okay with that.

As far as her treatments or condition I wont really have any new info until Wed. but her blood counts are showing consistently now that she is maintaining red blood cells, and staying normal with her white blood counts so we are hopeful by this news that she is accepting treatment!

I just wanted to say thank you again to everyone that has helped get us through this last month. It was much more difficult at times than I ever could have imagined or expected but with the love and support of everyone we were able to make it through. And of course a special thank you from Lily for all the birthday cards! They really have brightened her days with all the "special mail in her name". Its been a great distraction for her so thank you. We are happy and once again having fun and able to enjoy life!

NO MORE STEROIDS!!!

We are officially done with steroids for at least the next 4 months!! I can not tell you how excited this makes all of us! This past 29 days have been so up and down, back and forth and I am so glad it's over. Lily has changed so much in the last month it's kind of staggering, But 

now I see the light at the end of the tunnel and its bright and full of possibilities! We had our bone marrow biopsy today but we won't know anything until next week when we meet with the Dr but everyone seems very optimistic. I will defiantly keep everyone updated when we have more news to report but for now we are feeling so happy that our first big hurdle has been conquered. :) With both girls sleeping and jakes birthday tomorrow, right now I really see there is so much to be thankful for. I think my lesson for today is just never take for granted what you have. Even with sorrow there is always joy somewhere. Tonight we are one happy family :) 

Life's Lemons

So I'm going to tell a little story to start off this post. Holidays have almost always been pretty bitter sweet for me. When I was 10 years old my mom was diagnosed with lung cancer. She never smoked or was even around smoke but she grew up in southern Utah as a little girl in the 60's and the government used to do a lot of bomb testing in the deserts of Nevada and so the radiation fall out traveled up to where my mom lived. She literally developed cancer by playing outside as a little girl. When I was 13 my mom eventually lost her battle with cancer. I remember that day so vividly. She had a maroon recliner that she used to sit in all the time and she was reclined back just kinda sleeping. The room was filled with my family and our closest friends. She had been sleeping for most of the day but at one point she woke up and called each of us kids by name and with the biggest happiest smile on her face gave us each a hug and told us how much she loved us. I was sitting on the floor right by her and I had my hand on her stomache and she was so thin that I was able to feel every heartbeat up until her last. After she was gone I went outside and we had this little tree in our front yard and I climbed it, which was like literally 2 branches, and I just sat there, watching. It was like in the movies where there is a funeral and the little kid is hiding and just watching everyone around them like they are almost not even there. I was just sitting alone, removed from reality, and taking a  moment to process what life had just given me. After that day I used to go climb that tree a lot whenever I just needed a break. It was my time to get away from everything and I swear every time I would climb it the world would slow down, and get really quiet, and I could think so clearly, and I would feel so recharged and refreshed.

Today I wish that I had my tree. Today was Lily's birthday we tried to get her excited and have fun and play and it was so painfully sad to watch her not even care. We have one more dose of steroids and then we are done for now, but it is hard to see her so heavy and aggressive on a day when she should be so happy and care free. The Drs did do a good job preparing me that her personality would really change but I still couldn't have imagined this. Its so hard to watch my baby not even care about her presents this morning when there is a giant doll house sitting our living room, or have her not want play at Chucky Cheese with her cousin because all she wanted to do is just sit and eat. Its hard to ignore the judging stares that I get from other parents as she waddles around and cries for me to carry her, while I know they are thinking "jeez how did you let her get so big." As sad as it is to think about my mom being 85lbs its just as sad to see Lily so heavy and to know its the price of living right now.

Today I wish I had my tree because now I don't know whats coming next. We go in for a bone marrow biopsy again tomorrow to see how well the treatment is working so far and to plan for the next stage of treatment. Now its the moment of truth if this has even all been working. Now don't get me wrong I know I'm blessed despite my complaining. I still get to hold her and kiss her and snuggle with her and I do get an occasional giggle, and that really is all that matters. She is still here and this too shall pass. I know way too many people who cant have their babies with them at all. But I'm sad for Lily too. She has had to go through more in the last month than a lot of people will in their lifetime, definitely more than any other 3yr old we know. I just didn't think there would be a day that Lily wouldn't want to be a dare devil and slide down the slides, or run around playing with everything and making friends with everybody. 

Today I wish I had my tree so that I could carry Lily up there with me and make ourselves invisible to reality for just a few minutes so that I can reassure her, and myself, that someday we are going to look back on her 3rd birthday and laugh and say man, it was a pretty hard one, but they can only get better from here! :) Then we will giggle and jump down and start the day refreshed and assured and take tomorrows news with our big girl panties on, and praying that the next holiday she is back to being the Lily that we all love so much. 

Chemotherapy: A Place to Meet New Friends

So for the last week have been trying to think of what to write about and it has been so up and down that I just couldn't figure out what I wanted to talk about. I feel like for some reason I have been avoiding talking about our chemo appointments so I'm just going to talk about that!

Lily has had 3 outpatient chemo sessions thus far. Basically we go in and first thing that they do is take her vitals. Then they put her in a room where she sits on my lap and they access her port and draw blood to send to the lab. I have a numbing cream that I put on it so its numb when they access it and she hardly even feels it (not that she still doesn't like it). Then we go in a room and talk to the Doctor! They do the labs pretty fast so usually by this time we have her blood counts back and we can discuss everything we need to. Right now we only go to chemo once a week and it only takes about 20 mins for her to get her whole dose of Vincristine. We go in the chemo bay with her IV stand and its just a big room and they have beds or chairs with TVs where you can watch movies, play WI or Xbox, they have IPads to play with. Then they have a play area with little tables and chairs where the kids can play with all sorts of toys and games or eat lunch. They have pet and music therapists that come in also and talk to the kids and try to cheer them up.

Lily must usually go on a quiet day because she has only really had one other little boy in there with her. His name was Gabrielle and he was just a few months older than Lily. He was so cute and he was sharing with Lily and they were playing together and I thought " Wow. Is this really when/where we will have our play dates now? Okay, see you at chemo next week!" Unfortunately we have not seen Gabriel again yet, but I'm sure as time goes on we will meet other new kids.

So that's chemo. Pretty uneventful really. Lily of course hates it at first but then she usually calms down and is able to just relax. I know its kinda sick in some way but I actually like chemo day and I thinks its because I feel like I am doing something! Most days I just feel so helpless but when we are in chemo, its progress.

Latest Update!!!
So we knew that Lily had ALL (Acute Lymphoblastic Leukemia) but with all things there are specific types. When Lily had her first bone marrow biopsy they sent the bone marrow to a geneticist to find out exactly what type (or the name) of leukemia she had. Soooo science lesson real quick. For each of our chromosomes there are structures and there are numbers. Lily has a structural anomaly that has somehow mutated and caused her leukemia, which basically means that a piece of one chromosome broke off and attached itself to another chromosome, as opposed to there being an extra/missing chromosome (that would be a number anomaly). (You with me so far? ;)) Okay so there are for 4 really bad types of ALL and luckily Lily doesn't have any of those, and there are 2 really good and predictable types of ALL which unfortunately she doesn't have either. That means she is considered "Intermediate Risk". Okay so going back the science lesson, Lily's structural anomaly occurs on gene TCF3. Usually TCF3 breaks off of its self and attaches to chromosome #19. This is a really predictable leukemia with high survival rate. But in Lily case TCF3 has broken off but they don't know where it went. It didn't attach to #19 like usual. They don't know how this will affect her treatment yet. Her Dr. doesn't really think so far that it will pose a problem. Next week we will be in our 4th week of treatment and we will be doing another bone marrow biopsy to see how much leukemia is still visible and alive. Our goal is to have none and be officially in remission!! If that is the case we will start our second phase of treatment to kill all leukemic cells we cant see. Next Wednesday will be a big day for us because we will finally know if this chromosome mystery is going to affect her treatment and survival rate or not.

So far this whole situation is just so surreal that I'm still trying to decide if I've fully accepted it or not. We stop our steroids on Wed next week and then she will start to return to us and I cant wait until that day!!!!!!!! I miss her so much I really do. I hope when she comes back that she somewhat looks and acts like her self again. Pray for Lily to come back!

Today is a better day

This past couple weeks have been getting gradually worse and worse. At first Lily seemed mostly normal, actually after the blood transfusions it was the best she has looked and acted in a long time. She has been on a pretty heavy dose of steroids since she was admitted in the hospital and everyone warned me that behaviorally she would be a very different girl, and she is. She is very aggressive, and wants to eat constantly, and I mean constantly. She cant ever sleep, is very emotional, and in the past week alone has gained 8lbs. Its built my patience and I really have been doing really good, but this past weekend, for some reason, I completely lost control. I forgot how to be compassionate towards her, and lost all my patience. I would just sit and look at her I couldn't find my little girl anywhere! She doesn't act like herself, which I was prepared for, but she doesn't look like her self at all and that I was not prepared for. She reminds me of the little kid on the play ground that is short and fat that no one wants to play with. I pity her. I know that your saying how could you think this way about your sick baby? Well, she wasn't my baby. Shes not the smart funny 3 yr old that I know. She doesn't want to help with her sister, or play at the play ground or give good night kisses. That's not her anymore right now. Now she just screams and hits and cries. But I know she will come back, and once again I wasn't listening to what she was telling me, and let my anger and frustration get the best of me.

 Last night Lily was up a lot with some severe tummy pain and after a few really good poops she was able to sleep and once again I can find my baby again! She still doesn't look like herself and that still makes me sad, but today she was smiling at me, and giggled a few times, and was able to take a rest from eating without too much fuss. (That in its self is a small miracle) So my lesson learned for today is that I cant be too quick to judge her. She was hurting so bad its no wonder she was acting out. I was ready to jump ship when Lily really needed me most and so now I have a renewed understanding for compassion, and not just when its easy to understand, but always. Especially when you have given up on everything else. Today our home is happier :) We are smiling and playing. I am doing my best to remember that everyday is a new day and we can not know what tomorrow brings until tomorrow comes.

My first week of H***

I have always been a pretty level headed person. I LOVE science and healthcare, usually the bloodier the better. Stuff like that has never really bothered me. I like to watch surgeries and I watch them draw blood from me. I've always felt that I could handle everything medically pretty well. Mentally I'm a pretty tough cookie. I remember sitting in the hospital bed with Lily the night she was admitted and we were talking to her pediatrician and they were telling us all the different things that it could be and I asked her on a scale from 1-10 how worried should I be? She chuckled a little and thought for a moment and said "well, Lily is really sick so I would say like a 6." "Okay" I thought. "Its not an 8 or higher. We got this". Shortly after she got a call from the pediatric hematologist/oncologist and when she came back her demeanor had changed. She said that after talking to him she was a little more worried and that he was ordering a bone marrow biopsy for 11 am the next morning. She said that he was going to come in and look at a blood smear which would show what the blood cells actually look like. That with the biopsy we should know for sure what was going on.

Still I thought we don't know anything yet we have to stay positive. Everyone kept talking about different viruses, mono and this and that but no one was willing to say the L word. So, after alot of guessing and assuming, Lily and I spent the night in the hospital, her sleeping blissfully getting pumped full of someone else's  blood, while I lay there in complete shock that this is actually happening. At this point though I still thought we would be out of the hospital by Monday for me to return to work. Even the next morning her Dr. said that the blood smear showed a lot of immature cells but they didn't know anything more. 

So about 10:30 they came to Lily's room and got us to prep for the bone marrow biopsy. I was sitting in the hospital bed with Lily on my lap and the hematologist/oncologist comes in and introduces himself and sits down by her bed. He looked at Jake and I and said "so tell me, what do you know so far?" (Okay mini lesson learned, if a Dr. is asking you what you know in a situation like this, it cant be good. Just sayin). He then began to explain that Lily's blood smear showed a lot of immature blood cells which are leukemic cells. He said flat out right then and there that he knew that Lily had leukemia but he had to do the biopsy to find out exactly what kind. I'm not sure what I felt at that moment all I know is that I couldn't stop holding her and combing my fingers through her hair. I just tried to pay attention to what he was saying. He explained that since he was sure that she had leukemia that it was standard procedure to also do a spinal tap and place chemo right in her spine now to check/prevent the leukemia from getting to her brain... Whoa. So we are really doing this then... She really truly actually has CANCER!? No kid you ever really know has cancer. I mean everyone knows that kids get it but to know a kid with cancer? No. That's not something that would happen to me.... Oh but Jana it is. Its been 22 days since I found out that Lily has leukemia and I'm still hoping that someone will pinch me and Ill wake up to my sweet little baby girl tickling me and snuggling me and laughing with me. So far that is not going to happen.

Even after Lily's oncologist got the results back from her bone marrow biopsy and confirmed that she had Acute Lymphoblastic Leukemia (ALL) I was just sitting there, taking notes, trying to listen to everything that he said. I really felt mentally I was handling everything pretty well. 2 of my sisters were on their way to visit and I was trying to remain strong. I guess what I didn't expect was how physically ill I would feel. I wasn't a total basket case (even though I'm sure that would have been justified.) I mean I had my moments and I have had my melt downs (lets face it. Jake and I still do) but all in all on the outside I was pretty calm and composed. Inside on the other hand was a different story. I was so sick. As soon as anyone started talking about leukemia and this is what this means, and here is what you have to do for this, and next we are doing this, this and this I would get so nauseous I could barely breathe. I didn't really eat for 2 days after we got home. That I was not prepared for. That I could have never imagined. I really thought that I would have been strong enough to handle it.

Lily spent a total of 7 days in the hospital. She got 3 blood transfusions, had a spinal tap, intrathecal and intravenous chemo, and a surgery to have a permanent port placed in her chest for easy access to a vein for blood draws and chemo treatments. At not even 3 years old, and all through that she remained strong. She was brave and happy and resilient. My lesson learned from that is sometimes its okay to gain strength from your children. Lily had no clue that her giggles and jokes and snuggles got ME through those 7 days in the hospital. I know that this process is long, and hard, and I'll be the one to lift her  and give her strength sometimes,  but for that week, she showed me how to be strong and brave. She taught me how important and smile and a giggle can be. That is a lesson I will never forget. I cant always be strong, but now I know the simple things that I can do to give strength to others when they need it. 

I just thought that she had the flu.

One of the most commons questions that I get is how did you know to take her to the Dr.? The answer is I didn't. It honestly all starts for me back in January with Makinlee. On New Years Eve I noticed that the left side of  Makinlee's cheek was bright red. I thought that she had just been sleeping on that side so I blew it off at first but then when I still noticed it the next day I took a closer look. Sure enough the left side of Makinlees cheek was hot to touch, swollen, and still bright red. I took her to an urgent care and left with an antibiotic and the diagnosis of cellulitis. After a week of antibiotics and with no change in her cheek I headed back into her Dr. for a followup. They checked her ears and throat and found nothing unusual so I left with a 10 day course of a different antibiotic. Another blissful week goes by and still I have a baby with a cheek that looks like I clocked her a good one, so back in the Dr. office I was. This time however after a thorough exam of her left ear they found some drainage and a burst ear drum. They gave her an antibiotic shot and was scheduled to come back in the next Mon. (This was a Friday.)  That next week I went it to the Dr. Monday Wednesday and Friday, all the while giving her shots and oral antibiotics. Finally I got a referral to a pediatric ENT who ordered a CT scan. We did the scan that week and scheduled an appointment to get the results. So, so far, for the whole month of January I have done nothing but be in and out of the Drs office with Makinlee trying to figure out what is wrong with her.

Okay now I know that your wondering what this has to do with Lily and I promise I am getting to that. On the way to get the results of the scan I was with Kim and I said I just had this horrible feeling that something was really wrong. I said to her "This is one of those times when you take your kid to the Dr. and next thing you know you are moving to Seattle because your kid has cancer". Little did I know I was right all along. Of course at Makinlee's appointment the ENT told me everything was fine with her, her ear was all healed and she had nothing to worry about. I honestly didn't believe him at all. I just knew something was wrong, desperately wrong, and I was so upset that they couldn't find it.

Meanwhile, back at the home front Lily was suffering much worse, and I didn't even notice because I was too preoccupied with Makinlee. Lily had some symptoms that she was sick. For about 3 days in the middle of Feb she had a really high fever, 101-102. That went away and then she seemed to be getting better. Then the next week she started throwing up and did for about 24 hrs. That's when I noticed her getting so pale. But who doesn't when they have been throwing up? Then she, yet again, seemed to get better. She got some color back and seemed to gain her energy and appetite back. But then again on that dreaded Fri the 13th she was up all night again throwing up. Now I don't want to go into too much detail but this wasn't like normal throw up. I was thick, and almost foamy. That's what kind of alerted me that something wasn't right. She was back to being pale, not wanting to eat, and very lethargic and tired. She wouldn't walk anywhere, always wanted to be carried and very fussy. She would just lay down in random places and just try to sleep. But with all those symptoms I just thought it was the flu.

When I got home from work that Fri Lily went to hide to poop. She was a little constipated and was pushing really hard and said "Mom it hurts, it hurts". So at this point I thought well maybe was throwing up last night cause she is really constipated, Hmmm, maybe I should just call her Dr. and just talk this out with the nurse. So I did. I call the Drs office just expecting them to say "oh yeah give her some prune juice, have her poop and everything will be fine." Well after talking to the nurse she said that some of her symptoms didn't make sense and since it was 3:30 on a Friday I should just hurry in and they could check her out.

Okay people, I'm not going to lie I was really annoyed that I had to take her in. It was Friday, I'd already had a long day and the last thing I wanted to do was drive 25 min at the drop of a hat to the Dr. for them to say "oh yeah she just has the flu. Have fun cleaning up puke all weekend. :) call us Monday when you have to work and cant bring her back." :) Well knowing what I know now I would have been way happier to hear that. After her Dr. checked her out he explained to me that Lily was very anemic, she had an elevated heart rate and an enlarged liver and spleen and she was alarmingly pale. He recommended that I headed to the hospital right away to get some blood tests. I went straight there and they did the blood draw but they couldn't get very much blood but it would probably be enough. They said that they would call when they had the results back. I think we had been home for maybe 15 minutes when the lab called me and that they needed more blood to run the tests again. The lab tech said that we could wait until morning when she had more help if I wanted but something told me no, you need to back now. I told her I wanted to come back right then so we could figure this out. So we went back again, got more blood, and financially got home for the night. Not even 20 min later her Dr. called and said that she had secured a room for us for the night at the hospital and we should head right there. All they really told us at that point was that she was very anemic and most likely would need a blood transfusion. I was of course terrified. When we got there we talked to her Dr and she thought at this point that lily probably had some type of virus that had just gotten the better of her but that she thought she would be okay with a little blood and time. She did tell us that for a girl Lilys age her Hemoglobin (red blood cell) should be 11-13 and they were at a 4. She still didn't have any answers until talking to the hematologist so we decided with a blood transfusion for the night and to wait to hear from him the next day.

All in all I had a busy year, but deep down I knew, I just knew that there was something really really wrong. I would sit at home and just try to come up with a plan for if I ever got the news that one of my kids were really sick or needed major surgery. I would just sit and think about how I would be able to handle it and have a normal day again. I couldn't even imagine that devastation I would feel. With all these constant thoughts I was having, I thought they were just paranoia but now I know that my instincts were telling me your baby is sick, prepare yourself for the life changing news. All along though, I thought it was for the wrong baby. I was so worried about Makinlee that I didnt even notice Lily slowly fading away. So my lessoned learned for today is TRUST YOUR MOTHERLY/FATHERLY INSTINCTS, but also to not limit what they could be telling you. And also to be open to allowing those you trust help you figure out what your instincts are telling you. Confide with your husband or mother or sister or brother or best friend or whoever it is to help you put the pieces together. I know that I cant change anything with Lily's diagnosis. She was meant to get Leukemia no matter what, but maybe, just maybe, if I had paid more attention to her I would have caught it sooner. Lately I have noticed my instincts are right more than I expect. I am still just feeling like a new mom and trying to figure out what my guardian angels are telling me.

From the beginning.

Ever since I was young I always knew that I wanted to have babies. The day I found out I was pregnant with Lily was, and still is one of the blurriest days of my life. I wasn't married but it was still a welcomed unexpected surprise.I remember telling Jacob that day when he got home from work. I had gone to the store and bought a little pink baby bib that said "I Love my Daddy" and gave it to him. He looked at it funny for a second and then I saw when it clicked. He looked at me and said "Are you pregnant?". I just shook my head yes. Now those of you who don't know my husband super well my not know that he does tend to over react on things, (love you babe but you do), but I remember the look in his eye when he realized what I was saying and it was pure joy. The panic came just shortly after. But I knew he was just as excited as I was.

Through out my pregnancy I had some complications and was considered "high risk". It had nothing to do with Lily it was all because of me and my "uteran anomaly" but despite all the risk of premature birth and chances of bed rest Lily grew perfect and gave me no issues, and actually, to my annoyance arrived 2 days after her due date. Lily Carolyn Ross was born on 4/14/12 at 4:15 am and when she was born I remember her being so perfectly pink and beautiful. She barely even cried, and really from then on she proved to be one of the easiest, smartest, funniest, strong willed, and unique little girls I have ever met. From a very young age Grandma Kim and I have always called Lily an "Old Soul" and still believe that with all my heart today.

As Lily has grown up I have become more proud of her everyday. I didn't expect to be so proud of her when she was this young. I expected it as she got older but just to see all the things that she can do and say just blows my mind! She is only almost 3 but yet she tells it how it is and doesn't think twice. Her memory is better than mine which has posed quite a problem sometimes. Can we say Christmas? I know now for sure that everything happens for a reason. I know that her ability communicate is what has made this process bearable. Its hard enough for me to watch her change so drastically, both behaviorally and physically, but I also know our silver lining is that she can tell me what hurts, and how it hurts. At least I know I can help her manage her pain in that way.

My biggest lesson learned for today is everything happens for a reason. I have been shown that over and over again. I know Jake and I were meant to be together for this journey. I know that Lily being born when she was, was no "accident", and I know that she was meant to go through this to teach us all something. So far I can say that she has mostly taught me patience. :)