Category Archives: brother Jake

In the Hospital… again

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Well, it was shaping up to be such a good week, but Tanner came down with a low fever this morning that crept up to the dreaded 100.4. Once it hits 100.4, we have to come to the hospital to be checked out. We thought we were going to make it into the clinic, but with traffic, didn’t make it in time and had to come in the the ER. They did some bloodwork and her counts look good, and normally they would have done some IV antibiotics and let us go home provided we come back to the clinic tomorrow for a follow-up. Since it’s a holiday tomorrow and the clinic is closed, we are having to stay overnight so they can do bloodwork tomorrow and just keep and eye on her. Unfortunately, the hospital is full, so it looks like we’re stuck in the ER for the night. It’s noisy in the ER and no one sleeps very well here. It’s 10:30 and Tanner has still not been able to go to sleep due to all the interruptions and some pain. No nap today, either. I’ll be “sleeping” sitting up in a rocking chair. Lovely.

I’m a little glad we’re staying, though. She’s having more leg pain than normal and odd hot and cold flashes even though her fever is down. Better here than at home where all of this would be freaking me out.

The reality of this disease never ceases to amaze me. We were planning an afternoon swim at the Whitlers today and Tanner was so much more vibrant today. Even while she had a fever, we sat at the kitchen table and painted suncatchers, a project from VBS, which we missed, but a friend was nice enough to bring the crafts by. Just makes you feel like everything could go wrong at any moment. I’ve never been a worrier, but by the end of this I may be.

Did I mention that Jake and I have had colds and that’s probably why she has this fever? Imagine feeling like the smallest sniffle you have could be deadly for your child. I’ve hand sanitized myself to death, gone to the minute clinic and begged antibiotics out of them so I would get better quicker and even worn a mask around her at my worst. But, I’m learning that even when her counts are good, she still doesn’t have even close to the immune system you or I would have.

Thank God my Mom was in town so I could leave the house quickly without worrying about Jake. I keep thinking I can do this by myself, but I can’t.

Anyway, I’m rambling now and Tanner’s pain is increasing. I’ve had them call her oncology team because something weird is going on… my Mommy radar is going off. I’m going to see if they can get her some stronger pain meds.

Will update in the morning.

Beth

We made it!

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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.

Love,
Beth

The other one

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The first thing Jake said when he woke up this morning is, “Where’s Tanner? She feel better?” It’s one of the first things out his mouth every morning for the past three weeks. Even before she came home from the hospital, he would ask me when I came home, “Tanner come home, too? She feel better?”

When they are sitting on the couch together, he pats or rubs her leg and sometimes will repeatedly ask, to her annoyance, “Tanner, you all right? You feel better?” He helps me put lotion on her feet where they are cracking and peeling. He is interminably sweet.

But, I can’t help but think that a 2-year-old shouldn’t have to wake up in the morning worried about anyone. I keep telling myself it is a blessing that he is so small and that he won’t remember much of this, but then I realize that 2 1/2 to 3 years is a long enough time, that whether he remembers it or not, it will shape him. What will that look like?

Will he be the other child? The one people forget to ask about or I forget to tell about because he doesn’t have cancer.

The truth is, we all have cancer. Me, John, Jake, and of course most of all, Tanner. But, as it eats at Tanner’s body, it eats at each of us in different ways. A two-year-old that worries about his sister and knows that she can’t play like she used to. A mother and father who now know that anything can happen to your kids… nothing is out of the realm of possibility. A family that used to go, go, go and now is having to learn to find joy in quiet moments at home.

It kills me to turn away from Tanner sometimes when I know she is feeling bad and wants her mama, but I have two children and her needs cannot overshadow Jake’s every time. Jake has a cold today and was a little whiny and fussy. He needed his mama, too. And, although a little discomfort from a cold cannot really compare to the pain that Tanner is in, the need behind both is really the same. And, even when he’s not feeling bad, he still has needs — to play, to read a book, to cuddle, to ride a bike or run in crazy circles around the house. It’s gutwrenching, really, to decide that those needs are as important as Tanner’s need for her mommy when she is hurting and uncertain.

In the end, I can only do my best and hope that she will learn independence and fortitude in the face of adversity, and that he will always stay as sweet and nurturing as he is now. And, that he will know he is loved just as much, even though he didn’t always get the attention he might have otherwise had.

I can’t wait until the day I can tell him, “Yes, Jake, Tanner feels better. We’re all alright now.”

Love,
Beth

Being Different

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I felt like I was talking to an adult. To a friend or colleague who was telling it to me straight. Only I was talking to a five-year-old who has had to handle some pretty adult issues over the past few weeks.

Tanner had woken up from her nap in a great mood after having had a pretty good morning, overall. She was perched on the kid-sized table in our playroom. I was amazed. It was the first time I had seen her sit up without leaning against something in weeks. She was laughing at Jake and encouraging his wacky antics as he searched for the “monsters” she kept pointing out to him and telling him to run from. Then, the phone rang. It was my neighbor, Ashley, whose daughter, Corinne, is Tanner’s best friend. They wanted to come over for a few minutes and I thought it would be a great time since Tanner seemed to feel so good, so told them to come right away lest we lose the moment. That was where the fun stopped.

I told Tanner they were coming and she slid off the table and asked for a pillow so she could lie down leaning up against the table she was just perched on. She visibly slumped… face, body, legs. She looked miserable and terrified. I leaned down and said, “Don’t you want her to come?” She told me she didn’t feel good anymore. I asked her if she was scared and she nodded. I asked her why and she said, “Because we are not the same anymore. We’re different. I have leukemia.”

And therein lies the crux of the problem.

I would love to tell her they aren’t’ different, but I know exactly what she means. Corinne and her sister ran around the room, playing with our train table and a talking doll of Tanner’s, chasing Jake and generally, being kids. Tanner lay on the floor, being sick. She did liven up a little several times and talk animatedly about several topics, including, of course, food. But, right now, she sees huge differences between herself and her friends. They haven’t had to walk the road she’s had to walk over the past few weeks, they haven’t had to accept that they have a disease that will be with them for years to come, they don’t worry every day that their hair will fall out. She’s right… they are different… they are the kind of carefree kid mine was up until May 30.

Truth is, I don’t know what to tell her to make it better. I’ve never been through anything remotely like what she is facing. At five years old, she’s already topped my 40-plus years of living in the “difficult road to walk” category. I birthed her big self naturally, without any drugs, but that pain only lasted 22 hours and 17 minutes, not 3 years. I just don’t have any idea what she is really going through. For once, I am speechless.

In the end, our friends’ visit was exactly the kind of medicine we need more of. The more that Tanner sees that other kids still love her, still treat her basically the same, the more she may feel just like all the other kids. But, I still can’t tell her she’s not different… she just is. And, we’ll have to find a way to prove to her that different is okay.

Love,
Beth

waylaid

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So, today started out okay.  We had our second clinic visit, which went pretty well.  Tanner had blood drawn our of her port and chemo put into it, and we got a prescription for some extra stomach medicine that, hopefully, might help with the abdominal cramps caused by the steroids and exacerbated by the crazy cocktail of drugs she is taking.

On the way home in the car, her stomach is killing her.  We stop at CVS to see if they will rush the prescription for prevacid (she also takes prilosec and zofran) so maybe it will help her.  They are kind and take mercy on a sick little girl and we give her the prevacid, along with oxycontin (painkiller) and neurontin (to help with nerve pain) as soon as we get home.  She feels better within 15 minutes and is laughing and talking while laying on the sofa. 

Her blood counts were down this week, which they expected, but it makes her so weak and tired.  By noon, she is almost asleep on the couch after gorging herself on a buffet of food items.  I carry her upstairs where she naps for 3 hours and I have to wake her up so she won’t be awake all night.

I shouldn’t have worried…  the chemo has gotten her.  She is, effectively, waylaid.

I take Jake out for a scooter ride around the neighborhood and when we return, she is as sick as I have seen her.  Limp… lying on her back with her arms over her head in surrender, her beautiful face swollen from the steroids, the palms of her hands covered in a rash that will eventually cause her hands to peel the way her feet did last week, face pale, lips cracked… waylaid.  The only sign of life is a frantic pulse point at the base of her throat that looks as if it’s trying to say, “I’m still here… working hard, but still here.”

My eyes well up and I have to turn to gather myself in case she wakes up and sees me standing over her crying at the horror of this.  I want to hate this chemo… I want to curse it and beat it with my fists, but I can’t.  The irony is that these drugs that look like they’re killing my child are actually saving her.

While I take Jake up to bed, John scoops Tanner up and puts her in her bed.  I leave Jake’s room and stop to check on Tanner.  She is awake.  I creep in and feel her head.  She seems warm and I check her temperature to be sure (a temperature over 100.4 sends us back to the hospital).  It is normal.  I put chapstick on her cracked lips and ask if there is anything I can do for her.  She asks me to pat her and I do.  Then, I temporarily lose my composure and say, “I hate leukemia… I really, really hate it.”  She nods slightly.  Remembering to try to be positive, I add, “But we’re gonna get it, you can do this.”  Unbelievably, she nods again.  Humbled, I kiss her on the forehead.

She’s still under there.

Beth

One little moment

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My post for today was going to say, “Steroids.  Mood Swings.  Enough said.”  That was it. 

But, after running away for a walk and trip to the grocery with my friend Kim while John handled dinner and bed for the kids, I returned home to find a picture that Tanner had drawn for Jake to try to explain leukemia to him.  John said she told Jake, “Tata has cancer, it’s called Leukemia and it makes me lose my hair.  Daddy, get me a piece of paper so I can draw it.”  She then wrote the word “loocemea” (I might spell it that way from now on!) and drew two pictures of herself.  She said, “This is Tata with no hair and frowning.”  Then she pointed to the other picture.  “This is Tata with hair.  See, I’m smiling.”  John said she was animated and happy telling him about it, and that then they talked about how the leukemia would go away and her hair would grow back, and she said, “Oh yeah, Jake, I forgot about that part!”

Of course, I bawled.  It would be the second time today.  The first time was out of frustration and anger at what these drugs and this evil disease is doing to my kid.  The second time was because I realized that she is actually processing what is happening to her and that she understands it and is able to articulate it.  That means she could be just steps away from wanting to kick it’s ass.

She and I read this awesome book today called “Chemo to the Rescue” (thanks, Ashley).  It was written by a mom and her 8-year-old daughter who has been diagnosed with leukemia when she was 5 and wanted kids to know that chemo helps them.  It was a great explanation of the disease done in a way kids could understand, without glossing over it with analogies.  It actually explained what is happening inside her body.  She was fascinated, and it allowed us to talk about some things we haven’t talked about.  It was a good moment in an otherwise trying day.

So, look out loocemea… Tanner Page is armed with knowledge and on the loose.

Love,
Beth

starting to feel better

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We finally got Tanner to leave the couch! I put her in her room today after lunch for a nap (she slept 3 hours) and then had a pretty uneventful afternoon. Then, Tanner, whose entire life right now seems to revolve around what food she is going to eat next, remembered that Dad said he might bring her home McDonalds. I told her maybe we could spread a blanket upstairs in the play room and have a picnic. So, she calls Dad and puts in an order for she and Jake and we had a picnic upstairs. She was propped up on pillows the whole time, but was very alert and laughed a lot watching Jake and Daddy play like wild men. It seemed very normal, which is rare. So, I’m hoping today she might have a little more energy. I think the chemo is going to put her down for two good days every time and then, slowly, she will feel a little better each day until it is time to get whammied again. She told me today she was afraid to see her friends because she was scared she might give them leukemia. It took me a while to convince her that can’t happen and I’m still not sure she believes me. She also said she was afraid kids would make fun of her because she has leukemia. In what universe is it okay for a five-year-old to have to think about these things? Here’s hoping to see a little more of my girl back tomorrow. Beth

Awesome News

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Oh, you people must have really been praying for low numbers, because we got the results of Tanner’s bone marrow biopsy and, to everyone’s amazement, including the doctors, it shows she has less than 1% of leukemia cells left in her bone marrow after just one week of treatment!  That’s my girl!  So like her to be ahead of the curve.  The doctor was thrilled.  They had told us not to expect to get below 5%!

What does this mean?  Well, she is officially in remission, which seems such a weird term since she still has years of treament left.  But, the fact that she got there so quickly puts her in the “rapid responder” category which positively affects her course of treament and her prognosis.  Basically, this news, plus the test results from last week that classified her as low risk mean Tanner is in the very best position you can be in if you have ALL.  In the midst of all this awfulness, we feel extremely blessed for a moment.

So, no bone marrow biopsy next week… yeah!  Just IV chemo, which is oddly uneventful, but deadly to Tanner.  As I have said before, when she is kicking cancer’s butt, she feels like crap.  So, after waking up in a great mood today with awesome energy and improved walking, she deteriorated to just plain old sick by the end of the day, once yesterday’s chemo treatments kicked in.  She never did anything today but color once or twice.  Even after I turned off the TV, she laid on the couch for 4 hours with no entertainment other than watching Jake play.  Sad.

Speaking of Jake, he had tubes put in his ears and was home by 8:30 am (Did I mention that today was a VERY long day?).  He did well.  Cried a lot, and was pretty whiny and awful today, but otherwise okay.  My mom came with me to the surgery and John stayed home with Tanner.  My Mom and John’s Mom have been Godsends.  Seriously, there is no way we could do this without them.

Again, thank you to everyone I haven’t thanked in person or by email for the cards, presents, meals, favors, etc.  You know who you are and you know if I could, I would send a proper thank you note, but the kids’ needs right now are all consuming and I just can’t do it all.  I surrender.

Okay, and let me give one last futile attempt at steming the flow of presents coming Tanner’s way.  It is not that we do not appreciate them, but we have a whole room of them now, and she’s just too sick to appreciate them.  Many are not even opened yet because I just keep hoping she’ll feel well enough to get at ’em, but when she does feel good, she just wants to be a kid and play with her brother, sprinkle water from a watering can onto the patio, blow bubbles in the yard, etc.  Don’t get me wrong, I’ll be bringing all those crafts you’ve given us out over the next 7 months, I’m sure, and we’ll use them.  But, rather than send us anything else, make a donation to the leukemia association and help keep someone else from ever having to go through this.  Seriously.

What amazing friends and family we have.  We are humbled by the outpouring of support for our family.

Love,
Beth

Quick Update

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I’m tired, so I’m going to just deliver the news and save all my ponderings and pontificatings for another day. Tanner had her first “clinic” day in the outpatient cancer clinic. She was terrified, but did really well. Had her port accessed by needle for the first time, which was a little rough, but I think she will get used to it. They have some amazing numbing cream, but she just hates needles and gets really emotional. She did awesome in her surgeries — a spinal tap with chemo infusion and a bone marrow biopsy. In fact, as John and I sat waiting for her to wake up in the recovery room, John said, “This is our new normal,” and sadly, it felt true. It was the third time in a week, we had been in that very room with the same recovery nurse (Thanks, Ms. Lee… you’re awesome!)

We will find out tomorrow what percentage of Leukemia cells are still in her marrow. Less than 5% is considered remission, but they think since she started out with a 95% infiltration, she probably won’t be there yet and we will have to have another bone marrow biopsy next week. So pray for low numbers to save her one more surgery.

Her blood levels were great, holding steady and even increasing in some cases. Her red blood cells had dropped some, which is the source of her tiredness, but her energy level has been up the last few days so we are thankful for that. It will be interesting to see how the spinal chemo infusion and the IV chemo today affect her.

The doctor was encouraging about her difficulty walking. She feels it is still leukemia pain and not a side effect of the chemo (this is a good thing, since leukemia pain should fade and the chemo progresses). With her very high infiltration, it may take longer than normal for that pain to recede for her. If it is a side effect of the chemo, it will likely be with her for the next 6-9 months until we hit the maintenance phase of her treatment. So let us hope it gets better so she can get back to the business of playing.

Okay, this post is still longer than I intended. I have no gift for brevity to be sure. Getting up at the crack of dawn tomorrow for Jake’s surgery (yes, this seems like a cruel joke, but it is not, I assure you). He is just having tubes put in his ears for chronic ear infections, which is supposed to be just a nothing procedure, so not a big deal. Still, it was pretty ironic that there I was waiting for Tanner to wake up and I am on the phone with another hospital arranging for Jake’s surgery… again, my life is just weird lately.

Good night,
Beth

Almost a normal day

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Today seemed almost normal, in a way. Tanner had a lot more energy and her personality returned to her. She spent lots of time bossing Jake around telling him to bring her things — see, normal! But, not really normal… she still can’t really walk. She can go about 10-15 feet and then it’s just too much. Today, Jake gave her an old cane that was in our umbrella stand and said, “help Tanner walk better.” Seriously, he did. And she did. The cane is sitting by her bed as she sleeps right now. She used it all day. It really helped and gave her a sense of independence (she’s been holding someone’s hands until now). We’re really worried about her legs. She can’t walk partially because it is painful, but she also just seems to have a lot of weakness. We suspect it is a side effect of one of the chemo meds.

Tomorrow, we go back to Vandy for a spinal tap and chemo to the spinal column, a bone marrow biopsy to see how effective the chemo has been and her IV chemo. They expect to see less than 1% blast cells (down from 95% just a week ago). This just gives you an idea of how brutal this chemo is. She’ll be under for these procedures, so no pain there. I’m praying that she doesn’t have great discomfort afterwards from the bone marrow biopsy, but suspect she will.

So, the appetite increase they promised as a result of the steroids has finally arrived. Just in time, Tanner looks emaciated. She ate, and ate, and ate. Chicken and tater tots for breakfast. A cheese sandwich, oranges, banana, a slice of bread. Had ice cream sundaes at 9 am this morning (thanks Rosemary, for the ice cream and fixings). Why not? Then Tanner says, “Do we have any mini corn dogs?” So off to Sonic we go. I told Tanner at bed time we were having an eating party at 4 am. She can’t have anything to eat after 5 am and I don’t think she’ll make it until 1:30 pm when her surgery is without gnawing her arm off. She requested bread and gogurt. This is a weird new life, for sure.

Love,
Beth