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

Cruise Director Update

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Okay friends, the message is please don’t send anymore presents. You can read the next post to read Beth’s words.

You’ve got some things you can do: keep the family in your prayers and thoughts and/or make a donation to the leukemia association.

You can also send a card or letter to any family member. I’ve included the address on the following page:  How you can help page

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

Today get better

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I started out today in a funk, wishing Tanner felt better, wanting her to get up because the doctor and the P.T. said she should be able to, frustrated with the whole situation. I think we all learned a lot today. We upped her pain meds, which made a world of difference. She stayed awake longer, was much less whiny, sat up a lot on her own and even went outside some (around the block in a wagon, and in the back yard watching Jake play). We decided to trust her, not the doctors, when trying to determine what she is capable of doing right now and how much pain she is in. We didn’t push as much and she didn’t resist as much. We held our ground when we needed to and gave her as much control as we could over things that didn’t matter. Everything went better. In fact, we had the best medicine taking time that we’ve had in days. She actually accepted that she had to take it and was a trooper. She even opened up a little and told me she was really mad at the leukemia and mad at being sick. Amen little sister… you said a mouthful.

I think we’re finally realizing this is going to be a long, long process and there will be good days and bad days. On the good days we should make the best of them and not take them for granted. On the bad days, we’ll just hole up and sleep and cry if that makes us feel better… another good day will come.

Thank you all for the unending outpouring of support, good food, thoughtful gifts and prayers. We could not do this without you… really. And, if for some reason, we don’t remember to thank you with a personal email (I am not even going to attempt to write actual thank you notes for the many, many kindnesses, even though my Mother taught me better), please know we appreciated it mightily, but were busy kicking cancer’s butt and didn’t get it done. Please forgive us.

I’ll leave you with one sweet thought that came from the innocence of my two-year-old son. Jake adores Tanner and is so confused by her sudden disinterest in playing. Today when she was laying on the sofa, he reached down and gently rubbed her leg and then patted her really softly. He then laid his head down on her leg and smiled one of his best irresistible grins. Then, he stood up and said, “Yay! Jake made her better!”

Yeah, buddy, we’re all making her better with love.

Beth

We’re Home

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Well, we’re home! Came home yesterday afternoon. Tanner was in the worst mood all morning at the hospital, but as soon as we got into the wheel chair to go home, she became her normal self again. Hugged the nurses and thanked them for taking such good care of her, played with her new iTouch in the car on the way home and had a tear-inspiring homecoming reunion with Jake. I thought, “This is going to be so much better than I thought. She’s going to be just fine.

Then, she got tired and took a nap. And woke up screaming, in pain, cranky, etc. My heart sank. The rest of the day was a battle. It’s so hard to know what to do. The physical therapist and doctor say she needs to get up and walk so she doesn’t lose her strength, but she feels so bad. Convincing a 5-year-old to do something they don’t want to do because it is for their own good is futile. So, we feel a little lost. Think I will call a friend whose child has leukemia and see how she coped. Maybe you just grit your teeth and barrel through until the end of this awful steroid course (another 25 LONG days) and hope she is more reasonable after that. She will still take steroids for 5 days a month in the next phase, but not every day like this. These steroids seem to magnify the kids’ worst traits until they act that way all the time. It’s great fun!

One good effect of the steroids is the increase in appetite, but we haven’t come to that yet. She still doesn’t seem to want to eat but one meal a day. I just can’t bear the thought of her losing any more weight. Today, we finally managed to entice her with the idea of a bagel with strawberry cream cheese from Panera. So, off John, his mom and Jake go to Panera to bring it back before she loses her appetite again. Once those steroids start making her ravenous, I’m going to let her eat like a banshee — fatten her up for the next phase.

But, still, it’s nice to be home. No one woke us in the middle of the night to take her vitals, flush her IV or stop the infusion machine from beeping. What a blessing. She was still up quite a bit with pain and nausea, but rested better for sure.

One note: we are flush with gifts for Tanner. People have been so generous. Some she just hasn’t even felt good enough to open. So, again, if you want to do something send a donation in Tanner’s honor to www.lilysgarden.com. Knowing that we might be able to help save some other family from this horror is the best gift we can get.

Love,
Beth

Great News!!!

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I just received a text message from Tanner’s dad that she is home!!!! She is much happier there. Until further notice that are not accepting visitors. She needs to rest and since her white blood cells are the primary target of the chemo, her immune system is being weakened. Great news indeed!