Saturday, July 18, 2009

More shots, more blood.

Fridays seem to roll around here pretty quickly. Before we know it, we blink and Friday is here. Friday is treatment day, so never very much fun, but we trudge on through it every week like the Ally's army soldiers that we are. One of my blog followers pointed out that every Friday that has passed brings us one more step closer to the finish line. And the finish line is just so very very far away from us, but I like getting further along in this process. I want my girl to be cured and rid of this disease. I want my old life back. Well, something tells me my old life will never be back, but I want our new life to start then.

We had a long day this Friday. And I neglected to post again. Which seems to send some people into a tailspin and I am sorry about that. The day went about as expected. I am learning a little more, and this time I got the nurse started on the cross-match for Ally's blood right away (whereas last week this process cost us almost two hours) The really annoying part about this Friday was that Ally had to get de-accessed (the needle pulled out of her port) and that means about 20 minutes of crying while the tape from her bandage is pulled every so slowly from her skin. So we got through that, only to get re-accessed again the next hour. (The needles are only allowed to stay in her port for seven days.) She is getting increasingly apprehensive of the moment when they stick the needle into her port. She hates it and the anticipation is actually worse than the actual poke. So we dealt with that.

Once again, she got wheeled into the treatment room for another lumbar puncture with the chemo into her spine. They do sedate her for this, but today for some reason she was still crying quite a bit. The poor child is just scared. I was standing at the end of her bed and she just kept looking right into my eyes with the look of fear. I knew she would not remember this moment, but mom's are supposed to be able to take the fear away. And I cannot. I actually have the fear myself. So I was feeling pretty helpless. For some reason this time (and I think it was my sixth or seventh time) I really got upset. I was choking back the tears and feeling that big apple in my throat and hoping noone in the room was noticing me as they were all commenting on Ally's favorite colors and her nail polish colors for the week. Sometimes the sadness of it all just overcomes me and I have to pull all of that reserve strength out of me. It is exhausting. It is extremely hard to watch your child suffer in pain and be fearful of what is going to happen next.

They got the spinal done and this time she had to get 2 really large chemo shots in both of her legs. Thankfully, they did this while she was sedated. Two nurses each took a leg and counted to three. I watched the huge needle go in (twice) and Ally screamed. Sedation or not, it hurt her! Damn this disease. About 60 seconds after the shots, she asked us: Did I get my shots yet? We told her yes, they were all done. She asked again another minute later: When am I getting my shots? and we keep telling her "hey girlie, they are done." It was quite funny but I think she asked us about five times. At least she won't remember the trauma. Maybe I should ask if I can have some of that sedation.

She did need some more blood as her hemoglobin level was too low. I knew it. I could tell Ally needed it because she gets even more pale...and this was why I started the nurse on it early. The blood takes a really long time to transfuse, but we did make it out of there by 3:30 (after arriving at 8). Grandma brought our other kids down for a while and I think Ally and Grandma had some good times together. My role is to be the constant back stratcher, as seen here:

She just looks like an angel in this picture with her Dad.

I ran into Dr Broxson in the inpatient unit. I told him my worries about her infection. The last blood culture showed that her germ was still growing. So he told me that he was going to treat it once (with the 10 day course of IV antibiotics that we are doing at home) and then if the germ was still there her port would have to come out. I am just praying that these antibiotics kick it. Having another surgery would just be a major set back for us. He also enlightened me on the MRD issue. Remember how on day 28 she tested higher than the acceptable threshold for minimal residual disease? And the result was 11 months of intensive treatment rather than seven? Well, he told us that they are going to do another bone marrow at the end of August to test that MRD again. That is going to be a major source of stress for all of us. We will feel great if she goes down below .01% where they want her. But if she doesn't, well, I can't even think about it right now. But I can say that I am going to be highly anticipating this day, and directing my prayers towards that. Dr B went as far to say that he thinks she WILL be under the threshold. Oh how I wish he knew that for certainty.

I know this blog is about Ally, but really it is about all of us. Today was a very special day for our family because our baby girl Carly turned two today. She is just the sweetest of all girls...her sweet little voice can make you happy just by hearing it. And she talks all the time. She is the apple of our eye and brings much happiness into our world. She has cute little girl curls in her hair and the brightest blue eyes. She loves to dance. I cannot believe that she is 2! On her six month birthday, my mom had her surgery at the Cleveland Clinic. Ever since that day Carly has had to deal with much adversity and change in her life. Jerad joked that we would leave her with anyone, including the mail lady, but it is true. She has had to live 18 of her 24 months without the full presence of her Mama. She is pretty independent, laid back, and carefree as a result. But I wish I could have been there more for her. She loves her sister so much and I can already see them being best friends for life. Her brother picks on her some, but she loves him much and she gleefully calls him Nonni. (when she couldn't say Evan) They play together a lot and brother will even play baby dolls with her. Those two really stick together and she relies on him a lot when her Mom, Dad, and big sister are gone so much. They have a special bond because of the leukemia.
Carly's favorite birthday present
Loving her ice cream

On her new scooter, just like her big brother. Big sis lends her a hand.
Carly is just like my Mom in that she loves to play baby dolls and house and grocery store, etc. She got a cute little baby care station for her birthday. She had dinner at her favorite place (the boohers, haha) and her friends all went to Ritters and she had ice cream for dessert. We even sang to her. Tomorrow is her big birthday party so there are more pictures to come. Happy Birthday to my sweet Carly girl. We love you more than you even know.

Here are two videos that really show her personality. One is dancing in the car (always) and another is of her opening her present. (for Joshua, he wanted to see her open one)
video

video

10 comments:

  1. Aww, love the Carly videos and her cool new scooter! Happy birthday Carly! See you tomorrow at your party (wish it would be warmer).

    I can't without crying look at that picture of Ally with Jerad where you say she looks angelic. You are so right. And I know exactly the angel she looks like. It just blows me away, I can't even tell you how much.

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  2. I do love the picture of Ally and her Daddy. She is so, so pretty. As much as I loved her red hair, she looks so pretty without it.
    Happy Birthday to my sweet baby girl Carly. I can not believe she is 2 already, and it makes me tear up to think about the day she was born. Thinking about who I was with that day in the hospital and just how happy we all were.
    Carly is our baby girl... all the wingers love her so much.

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  3. Happy Birthday to Carly! She rocks. And congratulations to all of you for making it though another Friday. I think that I might just do the Carly dance once in awhile to remember to relax and smile.

    I'm also pretty sure that regardless of how much you have physically been absent or present, Janel, that she knows how much she is cherished and loved. This will probably be a rough week given the chemicals that Ally has in her body from Friday. But hang in there. And know Ally's army is there to push you along when you need it.

    Happy Birthday, Carly!!!!!

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  4. Oh my gosh,, Jammer. Carly's little car dance is too amazing! She must have learned how to groove from her mama. Steve and I are both thinking of you all everyday. love love love, Alli

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  5. tooo cute! there's nothing like a little one to make you smile and she's adorable! Hope the party is great! We will keep our prayers going for August. Give Carly extra squeezes for us, and big hugs to you and Jerad too. How amazing you both are, such great parents! LOVE!

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  6. It is so good to see Ally smile. She has a beautiful smile. And Happy Birthday Carly!

    I just wanted to share with you that Maggie's broviac line got infected less than a month into treatment and we had to have it replaced. Though it causes stress, it is something that I believe many children go through. Maggie has had a total of 5 central line surgeries, 2 broviacs, 2 temporary broviacs, and then her port. Unfortunately, it's par for the course (though our situation was a bit excessive). We pray though that Ally will not have to have her line removed though.

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  7. Carly is so cute. Happy Bday!

    I'm so sorry I miss you on Friday. One of these days we'll connect!

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  8. Happy birthday Carly - what a darling little girl! The independence she has attained due to being left with others due to Ally's illness won't hurt her at all - it will land her in good stead as she grows.

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  9. Carly is such a cutie patootie! Happy 2!!!

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  10. Friday's were always tough at our house as well because that is when John had his blood counts and if they were good enough he had a treatment. And waiting for those damn test results, bone marrow and others is ugly, but you can do it one day at a time---and before you know it the treatments will be over and your new healthy life will begin. I am so happy you have Evan and Carly and Jared and all of the army. Happy birthday Carly, keep on rockin to those tunes. Hang in there.

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