School Days

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March 16, 2010

Tanner will go to her fourth day of school tomorrow. It really, really seems too good to be true. She is so, so happy to be going and has adapted beautifully. Her teacher told me that on Friday, her first day, whenever she would look out at the class, there would be one child just beaming every time… guess who? We are so grateful to the kids and staff at Moore Elementary for making Tanner’s homecoming so special and for nurturing her with such love and compassion.

Friday and Monday she stayed at school until 1 pm. Friday she begged to stay. Monday she had the teacher call me to come get her… she was too tired to stay. But, today, I thought I would let her try to stay until 2 pm. I went to get her at 2 on my way to pick up Jake at preschool and she was in the gym skipping with one of those things that straps around your ankle and you jump over the rope with the ball at the end. She begged to stay and said, “See, I have aaallllll my energy!” And she did. So, I left her and came back for her at the end of the day expecting her to be exhausted but she wasn’t. After playing some wii with Jake, we went outside for some scooter and bike riding with the neighbors. Crazy.

So, I had my first real day off from Momming in nine months today. It felt great. John gives me lots of time on the weekends to recharge away from the kids, and my friend Beth is awesome about staying with them, too. But I always feel a little beholden. Not so when I drop the kids off at school. Everyone’s happy and I’m paying for them to be there so, no guilt… bliss.

I would love to say I did something decadent like had a massage or something, but I went to Big Lots for some organizing supplies and then unpacked and organized our bathroom stuff. So glamorous. But, you know what? I was uninterrupted and watched HGTV the whole time and ate my lunch by myself, so it was fabulous.

Did I mention we moved this weekend? We did. It went pretty well, although Tanner did not handle it very well. I think kids in her situation carry such a high level of anxiety to begin with that any little thing can put them right over the edge. She had very mixed feelings about moving. She is really sad not to be across the street from Corinne and worried that they won’t be friends anymore. But, despite what she says, I think she loves the new house. Bottom line, though, moving can unsettle any kid, much less one who has a lot of reasons to be afraid of what’s around the corner.

Tanner being anxious about something translates into some pretty supernanny-worthy behavior. I was in total agony when I called the play therapist to schedule an intervention and found she was out of town for the week. I am sure she heard the desperation in my voice when I left her a message.

Many thanks to my parents for helping out so much this weekend. My Dad hung and fixed many, many things while my Mom was her usual whirling dervish and ran circles around me packing and unpacking. They stuck it out even though Tanner was a nightmare and I appreciate it more than they will ever know.

Even Jake was a little whiny and ornery although mostly he just likes to tell everyone how much he loves his racecar room. He “wuvs” the new house and calls it our “new home.” God knew what he was doing when he gave me this child. He is like a balm for what ails me. Even though he is only three, he plays a huge role in helping me get through this experience. He recharges me daily with his sweetness and light.

This new house is such a blessing for us. It feels like a shoe that fits just right. I love everything about it (with the exception of my laundry room, which is really a laundry closet) starting with the cul-de-sac that we live on, which is the perfect place to ride a bike, the neighbors who have been so kind, and the view of the creek and trees out the wall of windows in our living room.

I’m off to bed in Tanner’s room. Leukemia has turned her into a chronic sleep walker and we are terrified she’ll make a wrong turn in this new environment and fall down the stairs. Until I feel comfortable that she has the lay of the land embedded into her subconscious, I’m bunking it in the twin beds.

Before I sleep I’ll be saying prayers for some kids that need them. Madelynn, our little 3-year-old friend and neighbor who has ALL is going through Delayed Intensification and is having a very hard time with nausea and stomach pain. She is three and can’t articulate her pain to her parents. Please pray the pain subsides and that her parents, Amy and Alex have the strength it takes to watch your child suffer so cruelly.

Also, a little boy named Cole has the same type of leukemia and treatment plan as Tanner, Lily and Madelynn and recently had a CNS relapse. He has caught a cold that turned into fungal pneumonia and is not responding well to treatment. Please pray that the doctors find the right medication to help him make it through this. So terrifying… this child was in maintenance and doing well. Just reminds me how fragile Tanner is even when she looks and feels great.

One more… Samantha who just had a bone marrow transplant and is in the midst of the worst of the side effects.

Too many kids suffering…

Love,
Beth

Clinic Day #29 — This is a good one!!!!

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March 12, 2010

So here’s how my conversation went with Dr. Mixan as we huddled over Tanner’s count sheet yesterday:

Dr. Mixan: “Her counts still look good. Her ANC is 2100.”

Me: “Oh, good.”

Dr. Mixan: “We’re going to bump her chemo up a bit to 75% and see how she does on that.”

Me: “Okay. “ (I pull him away from Tanner and talk quietly) “So, um, what about school?”

Dr. Mixan: “Yes.”

Me: “Really?”

Dr. Mixan: “Really.”

Me: “Really?”

Dr. Mixan “Really.”

Me: “REALLY?!!!”

Dr. Mixan: “REALLY!!!”

Me: “Tomorrow?”

Dr. Mixan: “Why not?”

This is the part where I dissolve into embarrassing Mom tears and hug the doctor. I turn and tell Tanner who is now officially the happiest girl in the world. She spread her joy all over the infusion room and everyone was congratulating her and telling her to have a good time.

So, she’s going to school this morning… for the first day… about 7 months late.

Wow. I’m speechless.

Love,
Beth

A Little Freedom and Gorgeous Weather Go a Long Way

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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

Recovering Slowly

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March 4, 2010

We got to come home at about 4:30 Tuesday 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

We Didn’t Make It

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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

The Inevitable

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March 1, 2010

Tanner in the flower girl dress she would have worn the day she was diagnosed with leukemia.

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

Steroids and Playdates

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February 27, 2010

Our new-found 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

Clinic Day #28

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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

We Need a Break

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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