September 24, 2009 I’ve yawned and rubbed my eyes through this entire day and just finished spray n’washing a mound of laundry, so I’m going to make this update brief and go to bed.
John took Tanner to Clinic today while I stayed home and tried to get done some of the things I keep not getting to recently. She just went in to have blood drawn for Counts and we were concerned she would have to get a blood transfusion if her Hemoglobin levels had dropped any more than the previous week. They had dropped some (down to 8 from 8.5). Somewhere around 13 is normal and below 8, they will consider transfusing, but the doctor thought that since Tanner wasn’t really experiencing many symptoms (i.e. her energy level is at it’s normal uncanny level) and she was not receiving any chemo this week, she did not need one. Again, we’ll watch her to see if anything changes, but they anticipate that level to be rising.
Her neutraphil level, which is the other level they watch carefully and is indicative of her infection fighting ability, was still great, although it had dropped 1500 points to 2000 from 3500 last week. Although the normal person would have between 5-10,000, 2000 is still excellent for a kid on chemo and they were pleased.
So, barring any unforeseen drops in levels, Tanner will begin the dreaded Delayed Intensification phase of treatment next Thursday by beginning steroids, receiving an IV dose of Vincristine and getting a lumbar puncture with Methotrexate. Nothing like starting with a bang.
Thursday is also the day of the Leukemia and Lymphoma Society’s Light the Night walk to raise money to find a cure for blood cancers. Team Tanner has raised $4,925 so far, just $75 short of our $5,000 goal. But, we don’t want to stop at our goal, we want Tanner’s team to be #1. (We were #2 at the point when they gave away the Taylor Swift tickets.) Sooooo, if you haven’t donated yet, but feel moved to do so, you have 6 more days to do it. Just go to http://pages.lightthenight.org/tn/MidTN09/TeamTanner and click on donate. Tanner is planning on holing a lemonade stand in the next week so she can donate to her team as well and… as long as her counts hold up and she holds up after a day of surgery and chemo… she will be allowed to walk with us and carry the white balloon!!! All of us who are walking will carry a red balloon in support of her. At first, she didn’t want to do this walk because she was embarrassed for people to know she has cancer, but now she is excited and hopes to be able to do it. She’s really started to accept that she has cancer and to believe that people still love and support her.
Brief post… I am just not capable apparently.
September 8, 2009 Rough day at the clinic today. It was the day after a holiday, so it was packed and we were there from 8:30 to 1:30, mostly waiting. She did well with the waiting, but decided she didn’t like “Sleepy Milk” after all and John and I had to hold her down while the anesthesiologist put her under. Fortunately, with her port being pretty much directly connected to her heart, the anesthesia works within 10 seconds, so it wasn’t a very long fight. Still, it just seemed like such a setback to see her so upset about it when she has handled it so well in the past. The anesthesiologist said that it is common, though, for kids to get upset about being put to sleep after they’ve had a break from it for while.
So here’s what a clinic day looks like… we arrive today at 8:30 am and sign in at the hematology/oncology desk at the touch screen (Tanner likes to do this herself). We then take a seat in the waiting room until we are called up to register and pay. Tanner gets a bracelet at this time and then we sit back down again until we are called into clinic. When we are called in, she gets weighed, measured and her vitals taken, then we get sent to an infusion chair to wait to get her port accessed. Her favorite nurse, Carrie, takes us back to the access room and Tanner sits in a chair to have her port accessed. She pulls off the Glad Press N’ Seal we’ve put over her port to cover the little blob of numbing cream that we put on it earlier that morning. Once that’s off, she cleans the cream off with a tissue and then the nurse sterilizes it with a cold cleansing stick. Then, they put the needle in through her skin into the bubble on top of the cone-shaped port. She likes to watch them put the needle in and wants to count down 3-2-1. Today, she didn’t even flinch. Then, the nurse puts a big plastic sticky bandage over the needle to keep it in place. The needle has a little black box attached to it and then an IV line coming off of it.
Once she is accessed, we go back to an exam room and wait for her blood counts to be run and for the doctor to come to see us. Today, Tanner’s counts were off the charts, for some reason that no one can explain. Her neutraphils were 3,500, up from 1,300 the time before and from 610 the visit before that… crazy and almost normal, although her immune system is still not considered normal. The doctor comes in an examines her, goes over her counts with us and answers any questions we may have. Sometimes, you might get two doctors; if you are seen by a fellow, the attending has to come in later and follow up. Once the doctor has seen counts and talked with us, he orders the chemo by her weight for that day. It takes a little while for the chemo to come up, so normally we go back out to infusion chair so we free up the exam room for the next patient, and when the chemo is ready, the nurse comes out and administers it over a 10 minute period. But, today, they were backed up so they sent us down to surgery and told us to come BACK up after surgery for chemo. Sigh.
Sometime during this whole process, a doctor comes by to run a nutrition test on Tanner for a study we are participating in. She puts some electrode stickers on Tanner’s foot and hand and hooks her up to a machine for a couple of minutes while Tanner lies flat. This is the kind of study I like… it doesn’t hurt.
When you go to surgery, you have to sign in and register again before waiting, again, in the outpatient surgery waiting room. Depending on the day, the wait can range from 10 minutes to an hour, like today. When they are ready, they bring us down to a holding room in pre-op and go through some vitals, and pre-op information before we are taken to the OR. This part usually takes about 10-20 minutes. Once we’re in the OR, we are allowed to wait with her there while they put her to sleep, then John and I go down to yet another waiting room while they do her spinal. It usually only takes about 10 minutes to do the surgery, then we go to the recovery room where our favorite recovery nurse, Leigh, usually tends to us and Tanner. She’s awesome and requests Tanner when she sees her on the board. Tanner has to lay flat for 40 minutes after the spinal to decrease the risk of headache and backache, so they let her sleep all that time, while John and I sit next to the bed and… you guessed it… wait.
Once they wake her, she recovers very quickly. They use propofol for the spinal’s (yes, the Michael Jackson drug) and she wakes up as if she’s taken a nap and is pretty alert within minutes. Normally, we go straight down to car and leave, but today, we had to go back up to the clinic for chemo. Mind you, Tanner’s had nothing to eat since the night before and it is 1 pm. Upstairs, they hook her up to get chemo and we wait, watch TV and eat chex mix until that’s done. Then, we start the process of getting the very sticky tape bandage off of her chest, so she can have her port de-accessed. Once we’ve taken the bandage off, they take the needle out of her port. Oddly enough, Tanner has more anxiety about them taking it out than putting it in. Again, she wants to watch and count down. Once the needle is out, we stop by the front desk again to make an appointment for next time and… finally… go home.
The combination of the three chemos Tanner got today have really messed her stomach up and she has been sick to her stomach all afternoon. She is slowly getting a little better and I hope will be fine by tonight. I’m going to see Wicked tonight with some girlfriends and you know who kids want when they don’t feel good… mama.
Suffice it to say, it’s a long day for adults, much less a 6-year-old and we’re glad it’s over. I know this is a long post, but if you’re reading this, you’ve made it through and I appreciate your patience. September is Childhood Cancer Awareness Month and I think it’s important for people to realize what these kids go through. Right now, Tanner’s going to clinic every 10 days, but for most of the first 6-9 months, she goes through this whole ordeal every week… every week. It’s a lot to ask of a kid and many have it much worse than she does. Lots of kids spend months shuttling back and forth between the hospital and the Ronald McDonald house undergoing intense therapy and extended hospital stays. Hopefully, through research, we’ll find a better way. Or better yet, find a way to prevent this mess.
September 7, 2009 It’s been a very nice weekend, but clinic day looms tomorrow. Tanner was not happy to hear she was going to have “sleepy milk.” She has to have a spinal with chemo injection, for which she is sedated, along with IV methotrexate and Vincristine. That is assuming, of course, that her counts are high enough to take more chemo.
It’s a lot of chemo to get at one time and I hope it doesn’t zap her energy or wreck her counts.
I’ll update tomorrow after clinic to let you know how it went.
July 6, 2009 We took a break from all the festivities to just kick back today and stay in our jammies until noon. We watched Shrek 2, made swords out of toobers and zots and had sword fights, downloaded tic-tac-toe to Tanner’s itouch, packed bags and pretended we were going on a trip, and played the Princess Memory game.
We never left the house, although I did try to get Tanner to go on a bike ride. We put the training wheels back on her bike, since I don’t think she could catch herself if she fell. So sad since she had just been riding without them for about 2 weeks before she was diagnosed. She was so into riding that bike; we went almost every day. Today, when I asked her if she wanted to go ride, she said no and when I prodded her for a reason, said, “I don’t think I’ll be able to push the pedals and I don’t want to know if I can’t.” I just told her we could think about trying again tomorrow. What else are you going to say to that?
I think she probably could pedal on a flat area if she were given a push to start, but I think it will be a lot to swallow given that her 2-year-old brother motors around like nobody’s business. I think, in time, she’ll eventually adjust to the idea and just accept it like she has most things.
Her legs have gotten a little better every day since we stopped the steroids and, I think, since we didn’t have a vincristine dose last week. Vincristine is a type of chemo that tends to cause nerve pain and weakness. It’s been two weeks since she has had a dose. She still can’t get up off the ground or climb the stairs without a lot of help and she falls often, but she is limping less and moving better every day. In fact, today she played Dance Dance Revolution on the Wii and did pretty well. Unfortunately, she gets another dose of vincristine on Thursday, but then doesn’t have another dose for the rest of this 4-week phase of treatment. Hopefully, she’ll be able to gain considerable strength during that time.
She told me today that her friend, Corinne, asked how long she would have to take chemo and Tanner told her 2 years. She said that Corinne was suprised, “She didn’t know I had to take it that long, Mom. I’ll be eight years old when we stop chemo, won’t I?” How I would love for that not to be true. She gets it, though. She’ll be six in two days and she gets it. I underestimate her.
Just a typical day at the Page house…
Tanner’s fever is down this morning after 2 IV antibiotics. Her leg pain has also lessened, thank God. Her blood cell counts still look good today, so I think we’re going to get to go home. We just have to find an attending who can make that official. The hospital is packed and it’s a holiday, so we may not even see the attending until this afternoon.
She’s on contact precautions right now. It’s so funny, because here I sit with my cold that has brought all this on, but every medical person that comes in here gowns up and wears gloves. So strange. Definitely don’t plan on coming by to see us unannounced; we can’t have visitors at the moment.
Good grief! When else does a 100.7 degree fever send you to the hospital overnight? Will keep you posted.
We made it! Tanner took her last dose of steroids last night and we finished our last day of Induction today! Tanner and I high-fived today as she, John, Jake and I goofed around in the playroom. She and Jake were taking turns riding the SmartCycle (how can she ride that so fast and still have so much trouble walking?) and rolling around on the floor. Tanner asked to go for an airplane ride on my legs (no easy task with her recent weight gain!) and wanted to do dance, dance revolution on the Wii. She is coming back to us slowly, in little stutter steps, interrupted by moments of pain and fatigue, but back nonetheless. I’ve missed her and can’t wait to see more my funny, lively daughter.
We had such a smooth visit at the Clinic today. It is scary how normal taking our daughter into surgery is becoming. You know when the Dr. says, “you know the drill,” instead of telling you all things that could possibly go wrong, that you’re becoming a regular. Tanner was a champ today. She chatted casually (about food, of course) with the nurse while she put the IV into her port — no crying, no screaming, not even any wincing. And, when we came to recovery, she had the doctor and nurses cracking up talking about tacos and Sonic. Unbelievable how far she has come in a month.
We’ll have the results of the bone marrow biopsy on Thursday (7/2/09). They use a more sensitive test this time to determine whether there is any cancer left in her bone marrow. Fingers crossed, but I know it will be good — Tanner’s fighting too hard for it to be any other way.
Even though it was a day of celebration, we definitely had a disappointment as well. We were under the impression that Tanner had a week off between the Induction and Consolidation phases of her treatment. We thought that today she was having a spinal tap with a chemo injection into her spinal fluid, the bone marrow biopsy and a dose of vincristine, then we thought we didn’t have to come in next week. Uh-uh. We had the bone marrow and spinal today, but no vincristine. Next Thursday (7/9/09), we go in for another spinal, a dose of vincristine and we start daily oral chemo. Does anyone see a break here? Chemo this week, chemo next week. Surgery this week, surgery next week. Hmmmm. I just keep reminding myself that there are no steroids involved in any of this. Maybe that’s the break.
We also talked in more detail with Dr. Mixan about Tanner’s leg weakness and pain. He said there could be three possible culprits: 1) Since Tanner had a such a high infiltration of leukemia cells in her marrow — 95% — it put great stress on her bones and she could still be having pain from that. 2) the steroids cause muscle weakness and she might get better as the effect of the steroids fade. 3) The vincristine causes nerve pain and weakness. So, we’re going to wait a couple of weeks and see if that gets better and continue to encourage her to move more. If we don’t see a significant improvement, we’ll start doing therapy.
All in all, a pretty good day. Having a visit from friends tomorrow morning and my Mom is coming for a few days to help. Jake and I have big plans for the pool and, hopefully, we might get Tanner to the Whitler’s pool in the next few days once her bone marrow site heals. Good stuff.
One more thing. Without sounding preachy, let me give you some unsolicited advice. Appreciate the things you are able to do with your kids, even the mundane ones. I used to wish I didn’t have to take the kids with me to the grocery store, and now that I can’t, I miss just doing that little regular stuff with them. Being able to just trot out the door on errands and stop off at the playground or McDonald’s playland without thinking about blood counts, germs or immune systems. I never thought something like this could happen to us, but it did. So, appreciate the little things that you have; they really are precious.
The last day of steroids tomorrow!!! I know we’re making a huge deal of this, but you just can’t imagine how horrible the side effects are getting. She is so exhausted from not sleeping and if her face and stomach swell any more, she will pop. Not to mention the constant stomach pain. At first, the mood swings seemed like a real pain, but now they just seem like a minor annoyance compared with the rest. I’m not sure how long the steroids will take to get out of her system, but we are all looking forward to a good night’s sleep, I can tell you that. Hopefully, by the end of the week.
I keep meaning to point out that Ron added a new link to this page. It’s to a book called Chemo to the Rescue. If you are the parent of a friend of Tanner’s, I would encourage you to read this book to them so they can better understand what is happening to Tanner and what to expect when they see her again. You can read the book online for free. It is Tanner’s favorite book now. It was written by an 8 year old girl and her mom after she finished treatment for ALL. They wanted kids to know that chemo is really a good thing and to understand what was happening to them. It is very positive, but honest. I think Tanner likes it because she knows it doesn’t sugarcoat leukemia with any pretty analogies and it is written to empower kids. We read it all the time and today, Tanner, John, Jake and I all chanted and drummed to the “rap” that is written in it about chemo. It was hilarious. She made up hand motions to certain parts of the book and had Jake doing it with her. They were pretending to put magic EMLA (numbing) cream on their ports and then stick themselves with an IV line. Bizarre fun.
I’m going right now to put together Tanner’s nighttime “snackpack.” It’s a big tupperware tub that we fill with snacks so she can nosh all night at will. She has requested Cheese Nips, Sunchips and Pretzel sticks.
Here’s hoping you sleep because I know I won’t 🙂
Great news! One less day of steroids than we thought, so tomorrow is our last day!!! You have no idea what this will mean to us. Tanner is really not sleeping at all at night anymore. Maybe 1 hour at a time, which means everyone at the Page house is very tired, including her. She is able to nap some during the day, but not for long periods of time, so I think she is chronically tired. Add to that the strain of the incredible amount of water retention this has caused, the stomach cramps and mood swings and we are ready, ready, ready for these to go! Believe it or not, my skinny little Tanner has huge cheeks, like she has mumps, and has a giant, distended belly. Those of you who have been pregnant before can attest to the fact that this is not a comfortable predicament.
Tuesday also marks the last day of Induction, our first phase of treatment. It is a milestone, but also a hard day at clinic. A bone marrow biopsy, spinal tap with chemo injection into the spinal fluid, and an injection of vincristine (another chemo drug) into her port. She’ll be sedated for all of this, which is good, but means she can’t eat past midnight the night before… uh-oh. You do NOT want to be at our house tomorrow night.
Had a great day yesterday. We continue to be able to creep more normalcy into our lives. Tanner invited her friend over for a slumbover. That’s where you do all the stuff for a sleepover — pajamas, bath, dinner, playing and watching a movie — but then go home when it is bedtime. Tanner lasted for about and hour and a half, but that hour and a half was so normal. They played upstairs in the playroom on the Smartcycle (thanks Will!), dressed in identical nightgowns, ate tacos and watched “Princess Protection Program.” It seemed just like it always was and John and I were grateful to see Tanner interested in playing. Hopefully, when the steroids wear off, we’ll see even more interest in normal things.
We continue to be really worried about Tanner’s legs, especially her right leg. She has started falling some; that right legs just buckles beneath her. We’re going to push for physical therapy this week.
John and I had some normalcy this week as well. I went our with my good friend Celia for a movie Friday night. Just some good girl time. And, Aunt Kim came over last night so John and I could go out for a walk together by ourselves. Got home early so we could get in bed. It was John’s night to stay with Tanner and she didn’t sleep much. My turn tonight…
Count down the last two days of steroids with us. Just 3 more doses! Yay!
Since we have been home from the hospital, we have been worried about Tanner’s walking. First, the fact that it is nearly limited to walking to and from the bathroom, and second, that it hurts and seems difficult for her. We worried that she had some weakness, perhaps caused by the chemo or the steroids. While her walking has gotten steadily better, it is still slow and limited. She has stopped using the cane and doesn’t need to hold our hand anymore. This is all good. She still labors up stairs, but seemed to even be getting better at that. The doctor basically said, “Use it or lose it” so we’ve been forcing the issue and she’s really been trying. Then, yesterday, she started complaining that the back of her right calf hurt when she walked. I stretched it, massaged it, but to no avail. She began dragging it along the ground because it hurt less than picking it up and walking. Two steps forward and one step back, I guess.
Last night, during one of her many nightly eating binges, she said she was so disappointed because she was going to show E. (John’s Mom) today how well she could walk with her cane, but now her leg hurt to much. Still, when she saw how tired i was on our 3rd trip to the bathroom for the night and, consequently, her 3rd eating binge, she told me she would go to the bathroom by herself so I could sleep. She said I should never take her to the bathroom at night again because I was grumpy at night (mind you, this was 2 am). So, for the rest of the night, she dragged her little leg behind her to the bathroom… sweet thing.
This morning, it is no better and her tummy started hurting again (could it have something to do with the two bagels and taco she ate for breakfast?). We marked another day on our steroid calendar (5 1/2 more days). She actually had a pretty good day yesterday, considering she had chemo the day before. When these stomach cramps from the steroids go away, I think she will feel so much better.
Five and a half more days… count it down with us!
Beth, Tanner, John and Jake