A Little Freedom

July 30, 2009 A great day at clinic today. Tanner’s counts were super — her neutraphils are 3400, which is almost normal. So, a little more freedom this week; we are allowed to go to a restaurant, not just to bring food home, but… drumroll please… to actually eat there! Hurray!!!

It was our easiest week yet. We just went in for blood work and a doctor visit and then came home. We had a prescription meds to wait for downstairs, so we ate pizza in the food court (again, something we have never been able to do) while we waited. Tanner seemed excited just to be able to eat in the presence of others.

Next week, provided her counts are still good, we start our third phase of treatment (of five), Interim Maintenance. It lasts two months and consists of IV infusions of vincristine and of Methotrexate, which up until now, she has only had injected into her spinal fluid. We will go every 10 days, and the methotrexate level will be increased each time until her counts are so low, we can’t increase it any more. So, we can expect some low counts in this next phase, I’m afraid. The Vincristine causes neuropathy (nerve pain, weakness, tremors) in addition to a long list of other side effects, and the methotrexate can cause painful mouth sores. We are taking an amino acid called glutamine to try to prevent the mouth sores. I also think Vincristine is what caused so much of Tanner’s hair to fall out in the first phase of treatment. Her hairloss has pretty much ceased, but we haven’t had any Vincristine for a while. I think this will be the point where the rest will likely fall out. I has thinned considerably, but she has a lot of hair, so it’s still pretty. My hope is that it is cool outside by the time she needs a wig/hat/scarf so it will be comfortable for her.

Also, school starts in just a little over one week. I think that will be really hard for her and will also mean there is no one available to play with her during the day. Then, she will have a homebound teacher for two hours, two days a week after school, so that will be two more days she can’t play with anyone. This will be our toughest challenge yet, I believe. Tanner is highly social and it will be a real challenge to keep her happy with no one to play with. I’m going to have to work very hard to develop some kind of schedule to our day, something I am not great at.

Had a great visit with the play therapist yesterday. John and I met with her for an initial consultation; Tanner will come next week. We liked her a lot and she seemed to have good insight into Tanner’s personality without even having met her. She believes some of Tanner’s misbehavior is a result of anger, but also that some is anxiety. She told us to think of anxiety as energy and explained that, in a six-year-old, if energy is not somehow channeled positively, it will become misbehavior. She’s helping us learn some strategies to redirect that energy and she will help Tanner do so also. We’re hoping it will help her get through not just leukemia, but through life.

Tomorrow I leave on my girl’s weekend to a mystery location. I am so excited… I expect lots of girl talk, laughing and, most of all, sleep. I don’t believe I’ve spent a weekend with the girls since Tanner has been born. Thanks again to Beth and Kim for planning the weekend and just for being my best friends for all these years. But, most of all, thanks to my amazing husband for recognizing how much I needed this and for knowing that I would have never done it on my own.

So, I’m taking a blog vacation until Monday. Maybe John will update you while I’m gone!


5 thoughts on “A Little Freedom

  1. I just learned of Tanner’s illness today from an accidental “butt call” to John… sometimes God does work in mysterious ways. He told me about Tanner’s diagnosis and about this Blog site. I just finished every entry in a single setting… I just had to read it all.

    Having raised two daughters, but never having dealt with anything like this, I can’t imagine the toll this journed is taking on all of you. Will keep all of you in my prayers. I have also sent out an email with the Blog web site to our Sunday School Class at BUMC (the old Parents of Teens class) as John had such a positive impact on our kids I know that they will want to follow Tanner’s progress and also pray for her continued improvement.

    It is still hard for me to believe as I still remember running into you at Cool Springs Mall having Tanner’s picture made with Santa (either this past Christmas or the one before… I can’t remember). It is just a reminder how fragile things are… OK one minute and not OK the next. Glad to hear you have such strong support from Family and Friends. With Kim (my wife) having battled through Thyroid Cancer just last year, I certatinly know how important the support.

    Look forward to reading about your journey on the Blog.

  2. Praying for little Tanner and rejoicing in her recovery. I have a question: Is the neuropathy a temporary side effect that will go away when the medication stops and she handling this side effect?

  3. Janel:

    Good question. Wish I had a definite answer. Theoretically, it goes away when she stops taking vincristine, but some kids have long-term damage from it. Vincristine is the most common chemo drug Tanner will take during her 2 1/2 years of treatment, so we won’t stop taking it until 2011, although we will get less of it once we hit long-term maintenance in about 4 months. This past month, we have had a break from it and Tanner’s leg strength and coordination has improved ten-fold. However, we start back on it again this thursday and get it every 10 days for the next 2 months, then every week for another month after that. Wish us luck!

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