Calling Nurse Page…

November 2, 2009 When John and Tanner came home from the hospital Saturday, they had a lot of stuff with them. We had been in the hospital 9 days and had accumulated a lot of things that John kept unloading from the car and bringing into the house. After 3 or 4 trips, he brought in two big cardboard boxes and set them on the kitchen table.

“What the heck is that?” I said, expecting it to be a gift of some kind for Tanner. He opened them up to show me all medical supplies necessary to administer the IV antibiotics to Tanner for the next four days. Yikes! John laughed and said, “I say we just take her back to the hospital and say we made a mistake… we want to stay.”

Ironically, that was an option. We could either stay four more days or learn how to administer the antibiotics. Seemed like a no-brainer to me until I saw those boxes. Fortunately, John had taken a video of the pharmacists’ explanation of how to use the supplies and I had asked the nurse to show me how to flush her line while we were at the hospital. There were also written instructions. How hard could it be?

It isn’t actually all that hard, just kind of unnerving considering the reason she is getting the IV antibiotics in the first place is because she had some staph bacteria in her line. So, slightly nervous, John and I glove up, read the directions through several times and go at it. It went really well, I thought, until I came back ½ hour later and no antibiotic had drained from the ball. That’s when I realized I hadn’t unclamped the line to the antibiotic… oops!

Since then, I’ve become a pro, even by flashlight at 2 am. I’m pretty fast and quite confident now, which is good, because I have to do it four times a day. I’ll have flushed her line 32 times, hooked up the antibiotic and administered heparin 16 times by the end. I sterilize the cap on her line, flush with saline, bleed the air from the antibiotic line, hook them together and unclamp everything to begin the drip. Then, I reset my alarm for an hour later, wake up, unhook her, flush and administer heparin to keep her line from clotting.

It’s an amazing contraption that allows us to deliver IV antibiotics at home pretty simply. No pole, no infusion machine… just a little balloon filled with liquid antibiotic that, once screwed into her line and unclamped, drips out of the balloon and down the line into her port much like a water balloon would drip out if you put a pinhole in it. So clever. She even has a little fanny pack she can put it so she can carry it with her if she wants to get up and play.

So, it’s been going very smoothly… until this morning when the needle came half out of Tanner’s port. John woke me up and I could hear Tanner crying and yelling. Nothing to do but pull it out the rest of the way and go to the clinic to have it accessed again. Tanner and I took Jake, which was fun because she got to show him the ropes and he got to meet the ever-famous Nurse Cari.

One of the nice things about this whole thing is that I get to do something for John. The whole thing makes him a bit squeamish. It’s not just the fact that you have to draw back blood to make sure the port is working, I think it’s also the thought that he might hurt her if he makes a mistake. At any rate, it makes him uncomfortable and I just told him not to worry about it; I didn’t want him to have to do it. So the miracle is that he has let me do this for him; he doesn’t often stop helping me enough to let me help him. I’m glad.

So, two more days of IV antibiotics, then a long day of lots of chemo on Friday that begins five days of IV chemo administered at home. We’re ready.

Love,
Beth

The Good, the Bad and the Really Cute

The Good, the Bad, and the Really Cute

October 29, 2009

We’ll start with the good news: the doctors believe Tanner is responding to the antibiotics and that we are on the right road to beating this thing. She is still having fevers, but they seem to be mostly pretty low grade and they are further and further apart. Thank God.

Then, there’s the bad news: I don’t think there’s any chance we will get home for Halloween. She has to be fever free for at least 24 hours and they want to continue giving her antibiotics by IV for a few more days and gradually take her down to oral antibiotics and see how she does before we go home. So… day 8 and still counting.

Here’s the Really Cute part: Jake came to visit today and the two of them sitting in bed eating bagels together was priceless. I could have cried. It was the most natural thing in the world and she was so motherly with him. He came in and said, “Hi Tanner. You not got any hair?” She just smiled and showed him the top of her head and said, “Feel it. It all fell out,” and that was the end of that. He just accepted her just like the big sister she is and moved on. John’s Mom also came and Tanner kicked both John and I out so she could be with Jake and her E.

She seemed to feel okay this morning, but was exhausted after Jake left and slept a lot. She seems worn out with being sick and the Zithromycin antibiotic they have her on is tearing up her stomach.

I miss my family. It has been more than a week since we have all four been together and John and I haven’t spent more than 20 minutes at a time together.

We have accepted the Halloween thing, though and John has come up with a great idea. We are going to ask our neighbors to keep their Halloween decorations up and let Tanner, Jake and a few friends Trick or Treat when Tanner gets home. Friends are helping to put together a flyer to distribute to the neighbors and go door-to-door asking for their help. On Halloween, they have a celebration in the hospital and do reverse trick-or-treating where the nurses and others come to the kid’s doors and give them candy. We’re going to bring Jake up here to “trick-or-treat” with Tanner and, hopefully, they will bend the two visitors to a room rule for that time so both John and I can be here with the kids. We figure we’ll have two Halloweens that way.

Please continue to pray for little Madelyn and her family. I saw Madelyn in the play room today (she is adorable) and she was doing well with her new port. Her parents continue to grapple with accepting what has happened to their child and dealing with the overload of information that they are faced with at diagnosis. It is such a difficult time and my heart breaks every time I see them. It is truly a club no one wants to join and I am so sorry to see another child and family start this rocky journey.

Tanner is asleep. A nurse is in hooking up her IV to start an antibiotic infusion. I’m going to put on my jammies, watch a movie on the computer (thank God for the laptops we all have) and go to bed.

No fevers, no fevers, no fevers….

Love,
Beth

Click Your Heels Three Times…

October 28, 2009 Seven days of fevers and coughing. Seven days in the hospital. No idea when we are going home.

More fevers today… sporadic, but still there. She didn’t feel good at all today and I think she is starting to feel down as well. She has some neurapathy that has shown up in her right arm, which is hurting her when she moves it. I also think she is just plain tired from never getting a good night’s sleep here. She took a pretty good nap today, but even those are interrupted. She is on 3 antibiotics, which probably are taking their toll as well. I’m at home and just got a text from John saying she has been asleep since a little after 6 pm today, so maybe she’ll feel better tomorrow. The doctor today said, “It will just take time” so I don’t have any idea how much longer it may be but I can tell you we are all ready for it to be over and for her to come home.

She has realized that Halloween is this weekend and knows she could miss it. I will be so mad if she has to be disappointed about yet another thing she has to miss. Don’t you remember how magical Halloween was when you were a kid? It just seems like a right, not a privilege, to trick-or-treat. This disease is vile in what it does to a child… physically, spiritually, emotionally. Yes, we will get through it, but it infuriates me sometimes that we have to, that she has to.

So, pray that a six-year-old little girl gets to exercise a right to trick-or-treat this weekend. Pray that cancer doesn’t win this one.

Love,
Beth

We Need Prayers

I know you’re already praying… that’s just the kind of people you are… but we need to go into overdrive. Tanner continues to have fevers that come and go. Today, they were higher… 103. She is coughing almost constantly. She’s tested negative for all the known, testable viruses and, thus far, has grown nothing on her cultures suggesting she has a bacterial infection. Since she is not responding to the antibiotics, they think she probably has a virus, which they really can’t do anything about. They ran another chest x-ray today because of her cough worsening, but we haven’t gotten the results back yet. I think if it had shown pneumonia, they would have already started her on new drugs, so I’m assuming it was negative.

She actually feels fairly good and is in good spirits. When her fever spikes, she feels pretty bad, but tylenol brings it down and they give her oxycodone for pain and then she is better and a bit kooky!

A bed opened up in the oncology unit and we got moved there this evening. We’ve been on a general peds floor and we are grateful we have been moved to the floor where the nurses are more attuned to her particular problems. They drew more cultures tonight after her fever spiked again, so maybe something will turn up and tell us what this is so they can treat it better. It’s frustrating and we feel helpless when we are told the plan is to “stay the course and hope she fights it off.”

Her neutraphils and white blood cell counts have not improved at all and her hemaglobin and some other counts have dropped some. It’s scary, but we have to have faith that we are in the right place with doctors who will know how to make this turn out okay.

One funny story… we had a singing transporter today take us to the x-ray room. He had a wonderful voice and sang Elvis, Jim Croce, some Christmas songs and many others. He and Tanner sang Rudolph the Red Nosed Reindeer in the elevator and he made her promise that next time, she would teach him a Hannah Montana or Taylor Swift song. The people who work here are the very best kind of people.

You probably saw the picture of Tanner in her new hair today. It was a miracle that “hat wig” came in the mail today. It was supposed to take 5-7 days to get here, but arrived in 3 days, just in time. Tanner’s hair is all gone now save for a few wisps. She looked at herself in the mirror today and cried. She told me she looked hideous. Then, the wig came and she got so excited. She has even decided she wants the remaining hair shaved off as soon as possible, something that will make her feel more comfortable and will actually be cuter than the wispy pieces. She likes the new wig so much that we ordered another in strawberry blond! She’s deciding whether she wants brown as well.

So, I’m praying to the Virgin Mary tonight… I figure she’s a Mom too and knows what it’s like to worry about her child.

Love,
Beth

The Freaky World of Cancer

mommy in maskOctober 19, 2009 Yes, it’s me in the mask. Fuzzy picture taken by Tanner, from whom I am trying to keep my throat infection germs. I tested negative for strep, but have some kind of throat thing and the doctor mercifully gave me antibiotics to try to make it go away fast before I give it to Tanner. Hence, the mask. Attractive, no?

The last two infections I have had, Tanner has also picked up. Whether we got it together or she caught it from me I don’t know, but I do know I need to stay away from her until these antibiotics have a chance to work.

As usual, my best friend, Beth, rescued me. She stayed with the kids for many hours today while I tried three different clinics and two different pharmacies to get what I needed. I literally don’t know what I would do without her. My Mom and John’s Mom are lifesavers and so willing to help, but they live 2 and 3 hours away. Beth is always there when I need her. She is family, and my kids couldn’t be any more her niece and nephew if we were related by blood.

Which brings to my point of this post, which is to acknowledge that, in order to survive something like this, you have to let go of your independence and your assertion that you can handle things without any help from anyone else. You can’t… trust me. You need help, and plenty of it. It takes a village to see a child through cancer, especially the kind that lasts 2 ½ years. I know I may not always accept help as gracefully as I should, but please know that it doesn’t mean I don’t appreciate it. I do… believe me. I just don’t want to need it. I think it is part of my desire to have a normal life where I didn’t need people to take care of my kids for days at a time, cook me meals, fold my laundry, etc. I want to do it all myself, but thank God for those of you who realize I can’t and do it anyway. I love you… really.

Tanner is still feeling pretty rotten. Every day she takes the steroids, she retreats a little further into herself and gets a little more limp. She lies on the sofa and watches TV or plays on her computer. If you turn off the TV, she will just lie there and stare into space or doze off. She asked John to take her to bed at 6:30 tonight, but will have trouble sleeping. Last night, she woke up 3 or 4 times, once at 3 am for some “cheesy snacks!” Thank goodness we have the prior experience with the steroids and know this is normal and will go away within several days of stopping. She only has two more days of the steroids, so I think she’ll start coming out of it Friday or Saturday. Then, she is done with steroids until she starts long-term maintenance in a month or so. But, they are a very important part of leukemia treatment and she will take them the first five days of every month for the remaining year-and-a-half of maintenance.

So, we’ll just keep renting movies and letting her lay on the sofa until they start wearing off.

I’m off to bed, hoping the antibiotics will work their magic overnight and I will feel better tomorrow.

Love,
Beth

Couch Bound

October 18, 2009 Poor Tanner hasn’t gotten up off the couch for two days now… the steroids do this to her… she just feels cruddy and is sullen and whiny. She looks so pale and sick, it reminds me of the first month after she was diagnosed. She keeps asking me when she is going to feel better, and unfortunately, I think it will be 3 more days of steroids plus a couple of days for them to wear off.

The cumulative effect of the doxorubicin seems to have set in as well. She has painful blisters on her lip and her hair has begun to fall out again. She’s pitiful and it’s hard to watch, especially knowing that she’s going to feel worse in a couple of weeks.

This Thursday is just a counts day, unless she needs a transfusion (apparently, they expect her counts to have fallen significantly). It’s a week off designed for counts recovery before starting the second half of DI, which is purported to be the worst 4 weeks of the whole 2 ½ year treatment. Two days before Halloween, Tanner will spend all day at clinic. She’ll have to be put under for a spinal with methotrexate chemo. Then, she’ll have to be hydrated for several hours before she can receive an hour-long infusion of a new chemo called cyclophosphamide. Then she has to be hydrated for several hours afterwards. She will also start an oral chemo called TG that she takes for two weeks. She also gets another new chemo called ARAC. We go home with her port still accessed (like going home with an IV line in your arm) and we give her the ARAC through her port every day for five days. It’s a brutal, inconceivable day of chemo that should pretty much mess up Halloween. I figure if we did Light the Night in a wagon, we can trick-or-treat in a wagon, too.

So, it’s hard to comfort your hurting child when you know what’s coming around the corner. We’ve explained to her that this is the hard part and that we have to just dig deep and get through it.

Moore Elementary School has been our bright spot in the last few days. Yesterday, Tanner’s at home teacher, Mrs. O’Hara, brought a book that a second grade class made for Tanner. They made her their star of the week and each child drew a picture and wrote an entry about why Tanner is their star. They obviously had read the blog and looked at the pictures because they wrote about her doing hip-hop and ballet and told her that she is pretty and a great reader. This stuff is priceless and I know we will get it out and read it when times get tough. The school has also shown a Charlie Brown movie to some of the classes about a little girl with leukemia. They brought it for us to watch; I’m going to look at it tonight and decide whether it would be a good thing or too close to home. We so appreciate them wrapping their arms around Tanner this way. She really loves it.

In this journey, we have found, there are some times when it is easier than others to laugh and find joy in life. In the times when it is not so easy, I try to find humor wherever I can. So, I’ll share with you what has kept my sense of humor today… Tanner’s steroid-inspired appetite. While I have written this post, I have stopped twice to make food for her… once to reheat tater tots and once to make a pizza which she asked me to start making while she was eating the tots so it would be ready as soon as she was done. Too funny!

Please pray for us… I woke up this morning with a sore throat and am trying to keep my distance from Tanner. No germs, no germs, no germs.

Love,
Beth

An Ode to Steroids

October 14, 2009

Oh steroids, how I hate thee
The way you make my daughter acteth like a monster
The dozen of meals I make a day because of you
Make me hate thee all the more.
The kicking, the screaming, the tantrums you cause
You are like an eclipse on the darkest of days
How I hate thee,
Let me count the ways.

Apparently 7 days off of steroids just isn’t enough for them to fully leave Tanner’s system, so now day 2 of this pulse of steroids is really just a continuation of the last pulse… day 9, if you will… which is when all the fun really begins.

Poor Jake said to me today, “Mom, she cares me,” which in Jake-speak means, “She scares me.” He just didn’t know what to do… she would call him into her room to play and then 10 seconds later, scream at him to get out and leave her alone.

On the plus side, she did make efforts to calm herself. She went to her room several times and got under the kitchen table once to try to get hold of herself. By bedtime, she was just a cranky, pitiful whiny mess. John carried her to bed and she lay with her back to him while he sat on the floor and read her a story.

Five more days… we can make it.

She is ravenous, as usual when on steroids, and I am frankly hopeful that she will gain some weight over this week. Her legs have gotten painfully thin and a little buffer to get us through the next 5 weeks of DI would be great.

Yesterday, she ate a corn dog, French fries and a slush at 9:30 am on the way to clinic after having 2 big bowls of cheerios for breakfast. Then, at 12:30 on the way home from clinic she ate another corn dog, tater tots and milk. The nausea then set in and she stopped eating until dinner. Today at lunch, she ate 2 bagels with cream cheese, two gogurts and two helpings of pineapple, got up and cried that her stomach hurt from eating too much. Then, five minutes later, said she felt better and wanted chex mix. I made her wait 15 minutes (really only 10 because I couldn’t take any more whining). Twenty minutes after the chex mix, I came down from putting Jake down for his nap and heard her in the fridge. She was pouring herself a glass of milk and had a cup of goldfish, which she refilled twice over the next hour. I think she is probably about a day away from all-night eating. Insane.

It is a little painful to see her “argue” with herself over the food. She knows that if she eats too much her stomach will hurt, but she is so compelled by the steroids to eat that she literally talks to herself about it. “I’m just going to wait a little bit before I eat this… yes… I’m afraid my tummy will hurt… but maybe just a few minutes, cause I’m really hungry… I really want it… maybe just a few more minutes, etc., etc.”

She takes Dexamethasone, which is 4 times as powerful as prednisone, if you have ever taken that for anything. I have taken the prednisone,and by night 2, do not sleep at all. So far, she is sleeping, but I suspect that will change in the next night or so.

Meanwhile, we’re trying to be patient without letting her get away with murder. She knows that they are making her act bad and she seems very sorry about it and is trying to control it as best as a six-year-old can.

Did I mention it’s just five more days?

Love,
Beth

We Almost Made It Through Sunday

October 11, 2009dec 08 015 Just when we thought we had gotten through this rotten, unending week, our beloved border collie, Millie, died today. She was 12 and over the past few months, had seemed to be getting old quickly. Today, she suddenly was unable to move and John quietly took her to the emergency vet so as not to upset the kids. The vet said she had several cancerous tumors and one had ruptured causing internal bleeding. John called to say she would only live an hour at best and I piled the kids in car and left a check taped to the door for the pizza guy who was on his way. In the car, I explained to Tanner that Millie was an old dog and had a cyst that was bleeding in her tummy and that the kind thing to do was to keep her from suffering any more.

Together, the four of us said goodbye to our sweet, gentle, Frisbee-loving dog and watching her pass peacefully. Tanner sobbed while Jake patted her and said, “Bye, bye Millie.” This sweet dog slept at the end of Tanner’s bed every night to keep away the monsters and keep a child with an active imagination “safe” at night. She was intelligent, loyal and the model of good doggy behavior. She is already missed.

Sadly, Millie’s passing is just one more loss for Tanner. Millie was her security blanket at night and she has been up 4 times already in the first 2 hours after bedtime. John will go sleep in her room tonight; if I go, I will wake her with my coughing. It was the worst possible time for this to happen (not that there’s a good time for your dog to die) when she most needs comfort and security in what is often a very scary world for her. I’m not sure what we will do.

John is devastated and keeps questioning whether he did the right thing by not opting for a surgery option which the vet said would only give Millie a few months. It would definitely have been nice to have some time to prepare Tanner for her passing. It was just so sudden (it all happened in a matter of an hour) and I think it’s hard not to second guess a decision you feel you made in haste, even if it was the right one.

We’re all tired from the week behind us, with nothing to really look forward to this week.

As John said when I came down from putting Jake to bed, “I want a do-over.” I think he was talking about the dog, but I was thinking about 2009.

Love,
Beth

Clinic Day #17

October 7, 2009

This evening as I stroked Tanner’s head and tried to comfort her until the Zofran and Oxycodone kicked in, I looked down to see two bruises on her thighs where the Peg shots were administered and was reminded of all she has been through in this seemingly endless week.

Those long-dreaded Peg shots turned out to be just one of the many trials this week that have shed some light on why this stage of treatment is called Delayed Intensification. First, there was the pneumonia-ish illness, three days in the hospital, the Peg shots, a breathing treatment that burned her mouth and upset her terribly, the steroids and, finally, back to the clinic today for Vincristine and the nauseating Doxirubicin.

She seemed very tired this morning before going to the Clinic and had a little crying jag about having to take a bath and having to go to Clinic. She wanted me to go with her, which of course I couldn’t, but John’s Mom went with them, so she got to have her E. with her. Clinic went well and she seemed to be feeling pretty well when she got home with her steroid-inspired McDonald’s Happy Meal. But, shortly after eating, she began feeling bad and fell asleep for several hours. When she woke she felt terrible, but we were able to get her nausea under control with medication, so we did better than last time overall. She has figured out that it’s the red chemo that makes her so sick and asked why she had to take something that made her feel so bad. When I explained that we only had to take red chemo one more time, she said looked at me with her pale little face pinched in pain and said she could stand one more time… amazing.

Surprisingly, the steroids have been fairly anticlimactic. She has really handled them well, with minimal mood swings or erratic behavior. The food obsession has kicked in and she wants cheese, grease, fat and more cheese. She literally begged me for McDonald’s hash browns this morning and I found myself at Kroger at 6:30 buying Velveeta for nachos! We finished the last steroid pill this morning and are off them for the next week…. Hurray!

So, now is the really hard part… knowing that we will do it all again next week… and the week after, and the week after. This is a marathon for sure, and there is little time to regroup before the next big hill is upon you.

My poor husband wins the MVP award this week. He has been Mom, Dad, Employee and Nurse this week and has kept his sense of humor to boot. There was a point today where he looked a little like if someone asked him for one more thing little pieces of him might start falling off of him… an ear, an arm, a finger. He just looked too stretched and I felt terrible that when everything was so awful, instead of pulling my weight, I had been just another burden this week. Bronchitis is hard for me to kick and even though I feel better, I still had to lie down for the majority of the afternoon in order to stop coughing.

And, Most Valuable New Recruit goes to John’s mom who rescued us this week, for sure. She has a job and a very busy life and dropped everything in a moment’s notice to help us. I, literally, could not have done it without her. I was down for the count on Tuesday and could not have taken care of Jake that day. Thanks to her, I was able to get the rest I needed.

And, last but not least, to my friends who showed up at my door with food (you know who you are)… what can I say? We are being carried through this journey on the shoulders of those we love and who, thankfully, love us back.

Week one of DI down, seven more to go. Don’t leave us now… we’ll be needing you…

Love,
Beth

Coming Home!

October 7, 2009

Yay! Tanner is coming home this afternoon. Can’t wait to get my hands on that girl! Jake and I have missed her and Daddy terribly.

She does have to go back tomorrow for clinic and chemo, which sucks, but we’ll cross that bridge when we come to it.

Had the Peg shots last night and John said they went as well as he could have hoped, considering they are so painful. The Atavan was a gift and we will be using it for these types of procedures from now on.

She is still hoarse and coughing quite a bit, but the docs feel like her lungs sound good and she is full of very powerful antibiotics.

Nuff said.

Beth