Tanner Time

March 8, 2010

Tanner got to go to a birthday party on Saturday for the first time since she was diagnosed with leukemia. Nine months with no birthday parties. We didn’t tell her until the last minute and she was so excited. It was a Young Chef’s Academy party so they made pasta and garlic bread and had a ball.

Tanner dressed herself for the party and came down in jeans and a jump rope-a-thon t-shirt with black high top converse. She has the girliest little face, but still… she gets her feelings hurt when someone calls her a boy, and this outfit would not help. I tried to convince her to wear a barrette in her hair, but she wouldn’t do it.

Turned out she knew all the little girls from school. But, it made me tear up a little to see how confidently she bounced into the room to great her friends. This ordeal could rob her of her self-esteem. I can easily see where I would feel a little like a freak when your parents keep following you around with hand sanitizer and telling you not to touch stuff everyone else is touching. But, Tanner’s confidence is definitely intact and I’m glad cancer hasn’t taken that away from her too. She’s still a happy, bouncy little girl that loves to play with other kids.

Saturday night we had friends over the new house for pizza in the basement. Great fun! Sunday was a gorgeous day and while John carted several loads of our belongings into the house, the kids and I had a picnic on the front lawn and rode bikes with our neighbors-to-be. We already love our cul-de-sac. There are so many kids and it feels like such a safe place for them to play.

School was out in Williamson County today and we went to a friends’ house to play outside on a beautiful 70 degree day. They had a new “zip line” and while the Moms watched from lawn chairs, 7 kids had a great time playing on the playground and just being outside. It was a welcome break from the drudgery of packing.

Tomorrow, Tanner and I will spend the day packing and taking stuff to the new house while Jake is at school. We’re in the final stretch here and I’m starting to feel a little strain. So far, though, it’s been a relatively easy move and we have no real deadline for getting our stuff out, so I’m just not going to sweat it if it all doesn’t get done before the movers arrive. Don’t get me wrong… I would rather not come back on Sunday after moving the day before to pick up the stuff we didn’t get, but we will if we have to. We have enough stress in our lives without creating imaginary deadlines.

One of my friends asked me why we would choose now, with all that has gone on with our family this year, to take on something stressful like renovating a house and moving. She said she thought it would put her over the edge. The funny thing is, it has been exactly the opposite. It has been a blessing. It has given us something else to focus on, something to look forward to and offered us a safe place to go when we couldn’t get out because of low counts. It’s a little like an adventure to go “camp” at the new house for a meal… pure gold when you haven’t been to a restaurant in a while.

But, mostly, we haven’t found it to be very stressful at all. Our experience with cancer has changed our idea of what stressful is. Stress is thinking your child might die, watching them in pain, feeling like they are a sick all the time, disappointing them over and over again, even if it is for their own good, feeling like your child is being robbed of her childhood. These things are stressful. A messed up hardwood floor can be fixed, a wrong tile choice in the bathroom can be covered with a throw rug, a missed deadline can be rescheduled.

Four more days until we move. It’ll all get done somehow. Meanwhile, we’ll enjoy whatever freedom we can get.

Love,
Beth

March 4, 2010

We got to come home at about 4:30 Teusday after her transfusion was finished. She felt pretty awful and was coughing almost constantly. We doped her up pretty good that night and she actually slept really well and seemed a lot better yesterday morning. Her fever stayed around until the late afternoon, but finally went away. Her chest was incredibly sore from coughing so much and she cried every time she coughed all day long. Oxycodone is a wonderful thing, but apparently can’t completely fix that kind of sore muscle.
Yesterday was John’s birthday, ending the annual 6-month period where he gets to make fun of me for being older than him. The kids made cards and Tanner got him a Starbucks gift card so they could go together – she for hot chocolate and him for coffee. Jake wrapped one of his race cars, “a gween one” for him and I gave him…. Granite in our new kitchen ☺ We had brownies and ice cream, but frankly, he got kind of gypped out of a birthday since nobody is all that celebratory right now.

Tanner’s still coughing quite a bit this morning. Thankfully, Jake has school today. He is losing it hanging around here without his playmate up to par. School will offer some much needed exercise. Thank you Ms. Julie for giving him some normalcy twice a week.

In between the nursing duties, I’m still packing. Moving day is just 9 days away. As stressful as moving is, at least it is something else to think about and something with an exciting and new aspect to it.

Counting on the IgG transfusion Tanner had to turn things around for us. Hope it delivers… for all of our sakes.

Love,
Beth

March 2, 2010

We didn’t escape the fever. Tanner developed one this morning and we headed into clinic after dropping Jake off from school. We’re still here. She’s receiving a dose of IV Rocefin (a powerful broad range antibiotic) and then she’s getting an IVIG infusion. That’s the antibody infusion I referred to in my last post. IgG is an antibody that should normally be between 600 and 1,000 in a blood sample. Tanner’s was 478, which is really not especially low for a kid on chemo. The chemo, along with killing cells, kills the antibodies in the blood. But, she has been sick so much, especially with coughs, ear infections and pneumonia, which are indicators of a low IgG level. They hope by giving her an infusion of IgG, she will feel better and her immune system will improve.

The IgG she will receive is compiled from the plasma of up to 100,000 donors, so she will have the combined immunity of lots of people. AMAZING… DOCTORS AND RESEARCHERS ARE AMAZING. Just yesterday, the guy putting the countertops in our kitchen said his wife was a researcher at a local cancer center. I told him to tell his wife we thank God for her and others like her every day.

It’s a little unnerving to have this transfusion; there is a low risk of her having a reaction (much like someone could react to a blood transfusion) and it concerns me that she is receiving a product that is donated by so many people. But, the doctors have assured us the risks are very low, but the possibility of a reward of an improved immune system outweighs any risk.

She feels lousy and is just done. She has broken down in tears several times over small things that wouldn’t normally have rattled her so much. We are tired of being here and tired of the rollercoaster. It’s almost too much for me to bear today, so I don’t know why a six-year-old should have to bear it either.

The nurse just came in and hooked her up for the infusion. Should take several hours and then we will get to go home.

I’m telling you… this is one wild ride.

Love,
Beth

March 1, 2010

Tanner finally caught Jake’s coughing virus. It was probably inevitable. The good news is I took her to clinic and her counts were still very strong (4,000!!!!) and her lungs were clear. They think she probably has the same virus he had, but the steroids have suppressed the fever aspect… hopefully. We’ll find out when she goes off the steroids tomorrow. She takes her last dose in the morning. She’s done really well with them this time. Her emotions have been more in check than in the past. She is still tired and doesn’t feel well and, tonight, not sleeping well, but all in all, better.

So, here’s hoping the cough doesn’t turn into something else. Her counts are certainly high enough to fight it off.

The doctor also decided to test her for something called hypogammaglobulinemia… really… I’m not making this stuff up. It’s an immune disorder that would have been caused by both the leukemia and the chemo that make’s Tanner’s immune system weaker than normal, even for a leukemia kid. They see it occasionally in kids with ALL. If she has it, she will need a monthly transfusion of IV Immunoglobulin during her clinic visit. The doctor says he has seen great results for these kids. We’ll find out next week at our clinic visit.

So, not what we planned for today, but it turned out well. Hopefully, she’ll get over the virus uneventfully and we can take advantage of these crazy good counts and have some fun!

Love,
Beth

February 27, 2010

Our newfound freedom has been a little limited by the fact that Jake was sick and I didn’t want to share his germs with anyone else and Tanner being on steroids again.

Jake’s fever broke sometime in the night on Thursday and he is feeling better, though still coughing. Tanner is coughing some and complaining of a sore throat, but it’s difficult to tell what is the steroids and what is her actually not feeling well. She’s handling the steroids very well. She’s been tired (took a 2-hour nap on Friday) and asked to go to bed at 6:30 tonight. That’s pretty typical of steroid week, though.

Although we’ve got this new freedom, we have our eye on the prize and are still being somewhat cautious. School in two weeks, if her counts can stay up. There’s not really anything you can do to affect counts, but getting sick certainly doesn’t help. So, I’m carefully controlling who she sees so we can try to make it the next two weeks without catching anything. She seems more susceptible to getting sick during steroid week – or at least that’s my non-medical opinion.

The kids went to Aunt Beth and Uncle Glenn’s this morning to play and give John and I a chance to get some things done at the new house. Awesome! They had a great time, as always, but Tanner had fallen asleep on the couch while watching a movie and we had to wake her to go home. She rested when we got home and had a much-anticipated playdate with Corinne this afternoon. She was wiped out by 6:30 and ready for bed.

John and I got to spend some time cleaning the construction dust out of the new house and putting together some shelves we bought for the kids’ rooms. The renovations are going well and on target for us to move in two weeks… yikes! So, I suspect we will do lots of packing tomorrow!

Love,
Beth

Ahhhh… Good Counts

February 24, 2010

Yay! Tanner’s counts were 3,100!!!! Hallelujah! Now, maybe they’re high enough to fight off the virus that Jake has which is causing fever and coughing.

John took Tanner to clinic today, while I took Jake to the pediatrician’s office. It can’t ever just be good news, huh? Jake has a virus and the trick will be keeping Tanner from getting it. Her counts are high enough that she might escape, but we will be extra vigilant for the next few days.

Spoke to John just a moment ago; Tanner was out of surgery for her spinal with methotrexate and was in the recovery room sleeping it off. They’ve planned on a run to Chili’s to pick up lunch. She hasn’t eaten since 2:30 am this morning; we woke her for peanut butter and jelly.

She will restart her oral chemo at 50% dosage and we return in two weeks for a counts check to see if her counts are still high. If they are, they will raise her chemo dosage to try to get her to stay within the 1-2,000 range they are looking for. If they have come down some, that may become her permanent dosage. It’s the Long Term Maintenance Dance where they try to find the correct dosage to suppress white counts enough, but not too much.

John and I laughed about my bad luck. I didn’t go to clinic with them, where normally, we have to hold down Tanner to get her “sleepy milk” for surgery. She gets very anxious about it and cries and begs me not to let them do it, even when she has Versed in her. But, this time, they had a new anesthesia team who hid the sleepy milk from her and gave it to her without her knowing. John said she drifted peacefully off to sleep with no crying.

I, on the other hand, got to take Jake to the pediatrician where I had to… you guessed it… hold Jake down while they did a strep test and nasal flu test. No escape from the screaming and crying and begging for me!

If Tanner’s counts are good at our two-week check, she’ll be able to return to school…. Hoping and praying.

Love,
Beth

February 24, 2010

Tomorrow is Tanner’s clinic visit. She will get an IV dose of Vincristine, have a spinal tap with methotrexate and, of course, get counts. I had this hope that she would be high enough that she could at least go into school tomorrow for her class photo. I don’t want her to look at her yearbook and see her whole class there without her. I’m not saying I thought it would really happen, but I hoped it might.

This morning, Tanner has come down with the cough that Jake showed up with yesterday. Of course. It might be fine. Her counts might be high enough for her to fight it off; she’s done it before. Or, it might not be fine. Her counts might take a nose dive again, she might get a fever and have to go to the hospital for antibiotics, she might get pneumonia and become an inpatient. Count on nothing when leukemia is involved.

And, that’s just it. Count on nothing. Hope for nothing. Only I can’t help it. I hope. I just do. I try not to. I tell myself it will end in disappointment. I have learned not to share my hope with Tanner so she is not disappointed too. But, I can’t seem to live expecting the worst. It’s too bleak.

So, I think I’ll be disappointed again tomorrow. I think I will probably not hear that she can go have her picture made with her class. She will not know to be disappointed now, but she will be later when she sees the class photo she is not in.

As one of my cancer mom friends said recently, long-term maintenance is better, but it still stinks. Amen.

Love,
Beth

February 20, 2010

It is an exceptionally difficult thing to make a decision that makes one of your children happy and hurts the other immeasurably. I started the day with regret and ended it with little bit more peace, but still not knowing whether we made the right decision or not.

Today was Jake’s birthday party, the party his sister could not attend. Tanner seemed okay with this decision a few days ago, but yesterday began having a hard time with it. As she watched me blow up balloons and helped me stuff goody bags, she struggled with how to express her anger while still supporting her little brother. She would have an outburst, then apologize and say she wanted Jake to have a good time. It is wrong to expect a six-year-old to handle the culmination of 9 months of deprivation with grace.

This morning, her teacher came to the house for a lesson and Tanner broke down during the session and sobbed on my shoulder. She was sad and frustrated and didn’t know how to show it appropriately. Then, she was embarrassed about the way she had acted in front of her teacher. Tough morning.

On the other hand, there was a sweet little boy who turned three and deserved a birthday party filled with the unfettered joy that occasion merits. It was a good party. Just a few good friends, some presents and cake. He loved it, but I think even he missed Tanner.

I would like to say John and I were as joyful as we wanted to be for his party. But, it was hard knowing Tanner was at home feeling so abandoned. Her E. and Papa came to stay with her (thank you, you have no idea how much that meant) at the house, but I know my highly social girl would have loved to be directing a game for Jake’s friends.

I feel bad knowing I might have put more into Jake’s party if I didn’t feel so conflicted. I don’t think he noticed, but I did. He had a good time and loved having his friends, eating cake and opening his presents.

The day actually ended better than we could have hoped. John’s brother Michael, his wife, Amanda and their son Mack came to the party and stayed afterward for some fun. E. and Papa brought Tanner over to the new house and we let the kids ride the new ATV and their scooters in the cul-de-sac. We called for pizza and had an impromptu picnic on the front lawn while the kids played. Tanner loved seeing Mack (they are the same age) and it helped a lot to be able to play outside with him even if they couldn’t touch each other. We all went home exhausted and laid on the sofa for the rest of the day.

Cancer infects so many parts of our lives that it never ceases to amaze me the situations I find us in… hard spots with no clear right decision. We did our best to make the right decision, but it costs, as always, in some way.

Love,
Beth

February 18, 2010

I didn’t actually run down the street screaming pulling my hair from the roots, but I wanted to. Tanner’s counts were up, but barely. She’s at 430… anything below 500 is considered severely neutrapenic and below 1000 is neutrapenic. Carie assured me it is normal to have this happen sometimes and that after all the chemo she has taken, sometimes it takes the body a while to recover from a counts hit. So, same old, same old restrictions and come back next week for her monthly clinic visit. Still no oral chemo, but they will give her a dose of vincristine and she will have a lumbar puncture with methotrexate next week, regardless.

Stick a fork in us.

Love,
Beth

February 17, 2010

Tomorrow is counts day… please, please, please let them have gone up enough to at least allow playdates with friends. The kids have played with each other exclusively for 10 days now and it is, to say the least, getting old. I don’t dare hope for counts to be high enough for her to return to school, but it would be a great bonus!

We’ll go in first thing in the morning, so we could still get Jake to school if her counts are high enough for him to return. We need to bring cupcakes so his class can celebrate his birthday.

We had a great birthday celebration despite it just being the four of us on Monday. We ended up having a picnic in the basement of the new house with Chik-fil-A and a chocolate birthday cake with Star Wars guys on it. Jake was so excited about his battery powered Batman ATV. He didn’t even scream or make any kind of reaction when we showed it to him… he just made a beeline to it, with this crazed look on his face and drove off… priceless.

Been cleaning up the basement in preparation for Jake’s kid party on Saturday. We made the difficult decision to go ahead and have the party whether or not Tanner can attend. At first, she seemed very okay with this decision, but now that it might actually happen, is upset about it. I tried to explain that we just can’t keep postponing it… that he deserves to have his party. Hopefully, it won’t come to that.

Is it possible to move without ever packing anything? I’m trying. Every time I go over to the new house, we grab stuff as we leave the house and put it in big rubbermaid containers and unload it in the appropriate room when we get to the house. Pictures off the walls, vases, candles, accessories… you name it I have just grabbed it as I walk by. My goal is to not have to wrap anything in newspaper. Mostly, though, we’re in moving denial. We haven’t moved nearly enough and need to get in gear this weekend. Our moving date is just 3 weeks from this Friday. Yikes!

Cross your fingers and toes, knock on wood, throw salt over your shoulder, whatever you want, just wish us luck tomorrow. There’s only so much togetherness we can take.

Love,
Beth