Category Archives: treatment

Heavy

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March 29, 2010

It’s steroid week… always a blast. Tanner is handling it really well, but it just stinks and that’s all there is to it. She is also feeling the effects of her monthly dose of Vincristine. She is having a hard time with her mouth burning every time she eats or drinks anything. I think this is a precursor to mouth sores, but Tanner usually doesn’t actually get the sores and the feeling passes in a few days. This time, however, it’s lasting longer so we’re loading up on the glutamine to try to prevent them from turning into sores. It’s particularly frustrating to her considering the steroids make her really hungry – talk about a catch 22.

She’s actually been pretty active this weekend, though. The good weather, combined with the lure of the kids playing in our cul-de-sac, outweighed the steroid apathy many times this weekend. We flew kites, played baseball, rode bikes and jumped rope. She even made it to school for a couple of hours today and to the play therapist’s for a much-needed anxiety download.

I’ve been a little burdened the last couple of days. The little girl I’ve been writing about, Samantha Abbott, died yesterday morning. She was 7 and such a cute little girl. She was in tremendous pain in the last weeks of her life and her organs finally shut down and gave up. Too much for a child to have to bear and for her parents to have to come to grips with. Just unfathomable.

In addition, I heard through the childhood cancer grapevine about another Vandy patient, a 14-year-old girl, who was just sent home with hospice care. She was given six months at the very best, but has since taken a turn for the worse and it will likely only be days instead of months.

These stories both sadden me and terrify me. They eat at the edges of my hope and deflate my confidence.

As John showed me the text message Sunday morning that Samantha had passed away, we just stared at each other for a moment, eyes wet. It was a three-second moment, but I knew exactly what he was thinking. Then, we choked it down wordlessly and moved on.

What else can you do?

Beth

Clinic Day #30… A Sigh of Relief

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March 23, 2010

Every parent of a child with leukemia lives and dies by blood counts. We wait, tensely, for counts to come back after blood draw. We search the doctor’s face for a sign that counts are good or bad. Will they mean freedom or isolation? Will they mean a blood transfusion? Will they show something worse, something unimaginable?

Today, Tanner’s counts were perfect… in leukemia world, that is. Her neutraphils (big infection fighting white cells) were at 1300 (they want her between 1000 and 1500). Her hemoglobin was 11.2, which means that, for the first time in a long time, Tanner is not anemic.

Dr. Mixan and I agreed that she is probably suffering from allergies, not a cold. So, with no further ado, she got her chemo and I took her to school for the rest of the afternoon. Then, she had a playdate with some friends at our house.

She’ll go to school again tomorrow in the early morning, but I’ll take her out for an hour or so to go see the play therapist. I asked Tanner if she thought she needed to go see Allison and she said, “Yes, Mom.” There have been a lot of adjustments lately with the house and starting school. They are good things, but they are new nevertheless, and probably a little overwhelming at times. A playdate with Ms. Allison is the best medicine for Tanner’s anxiety.

Please continue to pray for Samantha Abbott – the cutest little girl who just went through a bone marrow transplant and has battled kidney failure successfully only to come down with a very serious blood infection. The medication to cure this infection is very hard on the kidneys, so it has presented a dilemma for the doctors.

Every time I think we have it bad, there is always someone who has it worse.

Love,
Beth

A Field Trip to Aunt Beth’s

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March 24, 2010

Did you ever have someone’s house that you went to when you were a kid that seemed magical? My grandparents’ house was like that for me. They had three acres with a big vegetable garden, fruit trees and grape vines that stretched across the yard. I remember doing the simplest things there… like playing in the gravel in their driveway, or climbing up this big weeping willow that was in the median of the circular drive, or sitting on the swing in the dark with my granny, listening to grown-ups talk and the cicadas sing.

When I look back on it now, there was really not anything to do. They didn’t keep any toys at their house for us to play with, although sometimes we would borrow the neighbors’ bikes. The house was tiny and modest, with one bathroom that all seven of us would share, and I slept on the floor every night, sharing a pallet made of old quilts with my two brothers and falling asleep to the drone of the television.

But, still, something seemed so magical about being there. Food tasted better, the simplest things were more fun. I think it was just so different from where I grew up, in the suburbs of Philadelphia. My grandparents lived in the country in Huntsville, AL, on a road named after them because theirs was the first house built there.

My kids have that at their grandparents’ houses, too. The magical basement at Grandmom and Grandad’s house where you can hit a golf ball into a net or “work out” on the exercise bike, or ride a scooter. And, the great cul-de-sac at E. and Papa’s where they ride the battery-powered cars she keeps for them, sled for days, and play with their cousin, Mack.

Digging in Aunt Beth's garden

But, as a bonus, they have Aunt Beth’s house. On an acre-and-a-half in Spring Hill, Aunt Beth dabbles in lots of things that I don’t… namely gardening and cooking. Today, the kids dug holes in the dirt, spread four-o-clock seeds under the weeping willow, fed the geese in the pond, “worked out” in the basement and cooked up some pretty darn good pizza roll-ups.

Being able to spend the morning at Aunt Beth’s took a little bit of the sting out of not being able to go to school for Tanner. She came home tired and napped while Jake napped.

Tanner manning her rock store at Aunt Beth's house

Overall, Tanner doesn’t actually seem to feel bad, although she is stuffed up. I really believe she has allergies, but without knowing for sure or having any idea where he counts stand, keeping her home again today was probably the right decision. We’re off to the clinic tomorrow after dropping Jake off and we’ll find out for sure where she stands. She’ll also get her monthly IV dose of Vincristine, begin her five-day course of steroids. Tomorrow night, she will also take her weekly dose of oral methotrexate, which can kind of wipe her out the next day. So, even if her counts are high enough to return to school Friday, I don’t know how long she’ll last. Monday and Tuesday will also be pretty doubtful as she is usually pretty wiped out by the steroids.

I don’t think I’ll ever get used to this rollercoaster. I might numb myself to it, but then I find I’m numb to all the good stuff, too. For right now though, that’s how I’m sleepwalking through this current disappointment… numb and in a fog.

I’m hoping to wake up tomorrow.

Love,
Beth

Stumbling Blocks

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March 23, 2010

Tanner woke up on Sunday morning with a cold or allergies, hard to tell which. She sneezed all day and was stuffy. Monday morning she seemed no better so we kept her home from school and gave Claritin a try. She didn’t sneeze as much and, aside from a little tired patch in the afternoon, seemed fine. This morning, still stuffy and we sent her to school. They called me by noon to pick her up. Her teacher said she didn’t have her normal energy level and that she asked to go home during recess.

She actually didn’t seem that wiped out this afternoon. She was actually really frustrated that I wouldn’t let her have a playdate. I kind of think she may have allergies, but who’s to know and wouldn’t it be a stupid mistake to send her into the germ fest that school is when her immune system in compromised. Truth is, we don’t know what her counts are. They increased her chemo two weeks ago and that alone could be affecting her counts. Also, you never know what a cold could do to her. We’ve seen infections and viruses make her counts go sky high and we’ve seen them wipe them out. So, difficult to make any kind of educated guess about the right thing to do without a true counts check.

We go in for our monthly clinic visit on Thursday so we’ll keep her out of school until then to be safe. If her counts are good, she can go to school Friday, but she’ll start steroids Thursday morning, so who knows whether she’ll feel like going.

It’s so hard to make a good call in this situation. Inevitably, you go with the choice that keeps her from ending up dying from some cold gone bad, even if it means you feel like you’re slaying her psyche in the process. Seriously, this is the way we think. She senses my lack of conviction in the decision to keep her at home and begs and wheedles for playdates, school or anything that gets her around kids. I don’t understand it, so I don’t know how she’s supposed to.

I feel like this is a blow I had prepared myself for and I don’t feel too surprised by it. Discouraged maybe, but not surprised. I hate that she’s having to stay home most of the week after such a small taste of freedom, but I’m also thankful she got to have last week at all. I’m more discouraged that, after the IgG transfusion, she still seems to have caught a respiratory virus. Hopefully, that’s not the case and it’s just some spring allergies.

Tanner’s handling the disappointment okay on the surface, but is still having some behavior issues which indicate all is not as well as she claims it to be. We have an appointment with the play therapist who, mercifully, came back from vacation. Hopefully, that will help.

On the agenda tomorrow… maybe a field trip to Aunt Beth’s.

Arggghhhhhh.

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

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