A Day in the Life of Kimmeebee

Let’s see…the high-dose methotrexate went relatively smoothly. Cal was with her most of the time it was dripping and he said she got nauseas, had a funny appetite and maybe even some bad reflux (she complained of a sore throat and needed pain meds).

But other than that, it wasn’t too bad! I’ve been with her much of today and she’s been an utter joy. She is so playful and happy. She’s even ornery at times, which is a sure sign she’s feeling frisky. She accidentally snorted into her arm today when laughing and boy did we have fun with that. She repeated the noise over and over again and we just giggled until we couldn’t breathe! She also walked to the play center. I remember our last two hospital stays and we could barely get her to walk a step, now she’s dancing in the halls.

The downside is that her ANC dropped to 400 even though her blood looks great. That means she’s back on low-bacteria food and has to wear her mask if she leaves the hospital room. But to be quite honest, we are much more comfortable in that zone because we know exactly what to do to keep her safe. When we were allowed to ease up on the restrictions it was very scary for us!

I’ll tell you something about being in the hospital…it’s rather isolating and confining, of course. But you have gobs of free time. And to have the gift of spending hours on end enjoying your child without the distractions of the outside world is such a blessing. Albeit, there are the twice-hourly potty trips, constant monitoring of food/fluid intake, med administration, etc. But aside from that, it’s just nothing but playtime. No dishes to do, no clothes to launder, no bills to pay. Just watching endless episodes of Dora the Explorer (really, someone poke me in the eye with a sharp object because it would be less painful!) and playing.

I know you are all jealous. You can admit it! LOL

Today was a big day! First day of Consolidation, which is phase two of three. It involves a two- or three-day hospital stay every two weeks to administer high-dose chemo via IV and then an outpatient clinic visit in between for two months.

We had to go yesterday for bloodwork and to get an IV bag of fluids hooked up. The platelets came back great! From 55 on Thursday to 139. But her hemoglobin was very low – 7.3 (they like it to be over 9ish or so) which is down in transfusion territory. So instead of the 30-minute platelet transfusion I was expecting, we stayed for the 2 1/2 hour blood transfusion. That doesn’t include the two hours it takes to get the blood ordered and tested to be sure it works with her blood. So we were there from 4pm to 10pm.

Got home at 11pm only to have to pack and return at 7:30am for procedures. I was so tired I could barely think. But the procedures went well. We knew from experience to ask for more pain meds for the spinal tap and they worked. The recovery still sucked, but not as bad as it has sucked, and for that we are thankful. They also did a bone marrow aspiration. I think it will be at least a week before we get results on the bone marrow.

While she was in recovery, she complained of a tickle in her nether regions. Lo and behold, the child has a raging yeast infection! Bless her heart, it’s just another lovely side effect of the chemo killing off all the good bacteria in her body. She’ll get IV meds for that, because they have to check her urine hourly to be sure the high-dose chemo isn’t jacking up her kidneys and a lotion could mess up the readings.

Whew. OK, so the high-dose chemo causes nausea and vomiting. We have gotten off scot free so far, but I don’t think there’s any escaping this side effect with this med. She’s gonna hurl at some point. And she REALLY hates throwing up. On top of that, she can’t give us any warning because she just doesn’t know it’s coming. So we’re really relying on her appetite (or lack thereof) to gauge whether or not she’s got a belly ache.

The chances of her being out of the hospital in time for the Light the Night Walk on Thursday are pretty slim at this point, but I’m still hopeful. If she’s still in, Cal has volunteered to stay with her so I can attend the walk since I have some folks coming in from out of town for it.

That’s all for now. I will give an update on the nausea/vomitting because I know you are all sitting there just dying for more gory details because hearing about yeast infections and booty mucus just thrills you to bits.

Edited to add: She is totally getting used to not being able to eat before procedures. Her first words this morning were ‘I want a snack’ and I had to tell her no. She hollered for a bit but calmed down and only asked a few more times. Not once did she attempt to place her cheeseburger order with a nurse or doctor! She understands she can’t eat til the milk goes in her buddy (that’s the anesthesia) and then she can gorge. She was pretty cool with that.

We don’t have clinic again until tomorrow, so no numbers to report. I’m not terribly hopeful about her platelets going up on their own. You can kind of just tell by looking at her that they are low. I guess we’ll see.

Emma’s cousin Hannah spent the night last night and oh what fun! She is nine years old and believe it or not, those two are like peas and carrots. They play together beautifully! It occurred to me that it has been a looooong time since Emma has been able to play with another child (outside of a few moments with the other patients at the hospital while waiting for an appointment). She has cheered up tremendously!

And it’s good for Mama too. Hannah is well accustomed to tending her little brother, so she can make sippy cups and help Emma potty. I got me a little bitty break as a result. In fact, last night Emma turned to me and said ‘You can go now Mama.’ Umkay, where do you want me to go exactly? ‘You go to work!’ LOL Sure. Let me leave the cancer patient in the care of a nine-year-old! I compromised and went in my bedroom.

And poor Hannah. Poor, poor Hannah. That little girly girl has three brothers at home! She needs to come over on a regular basis just to get a dose of estrogen. She made a beeline for Emma’s hair do-dads and has gone nuts over her slew of new toys. I love that they are six years apart and adore the same toys, books and movies. They are in bed together watching Snow White right now. Bless their cute little hearts!

So tomorrow’s the big day. She has an appointment for bloodwork and will get an IV bag of fluids hooked up to her central line to take home. If all looks good Monday morning, she’ll have the spinal tap and bone marrow aspiration, then she’ll be admitted for chemo. We have learned through experience that the spinal tap results in a painful recovery, so we’re going to pre-order her morphine just in case. Whew. Not going through that again!

As promised – a video of Emma changing the bandage on her baby. It’s so cool that she knows exactly what to do, even to the point of correcting me (like when I try to give her gauze instead of an alcohol wipe).

http://www.dropshots.com/kimmeebee#date/2008-09-19/09:28:14

Password is emmabee.

Also check out the newest pictures on dropshots.com. Shalein went ahead and cropped her hair short. Emma doesn’t even really notice. She knows she got her hair cut, but she couldn’t care less. Ah, the blessings of this age!

Well, she won’t be going inpatient tomorrow because her platelets have dropped to 55. They are still above the 50 we needed, but because they have dropped so much, the oncologist said to wait until they go back up. I asked them why we couldn’t just drop some platelets in her. They do it all the time! But they said that would be cheating and I should be ashamed of myself for even thinking it. LOL So we will go back on Sunday for another blood check and to get a bag of fluids. Then Monday morning if all is well, she will be ready to go in for her high-dose chemo. If that’s the case, she’ll be out by Wednesday hopefully and be able to attend the Light the Night walk! Yay!

The good news is she doesn’t have to take any oral meds except one antibiotic that she takes three days a week. So the chalky white antibiotic is gone. Double yay! She hates that one and I don’t blame her.

Also, her ANC is 700 so she doesn’t have to wear her mask, is off the low-bacteria diet and she can go in public again! The doc said not to go crazy and take her where there are big crowds, but we treated ourselves to a trip to Aldi and bought all kinds of veggies she wasn’t allowed to eat previously. Her first choice of forbidden foods was grapes. She’s also excited about getting to eat celery again.

Had a meeting with the dietician and contrary to popular belief, she is back to her previous weight and hasn’t grown an inch. She is right on target for her age group and in the words of the dietician ‘perfect.’

So all in all, a really good day. She did a great little happy dance in the hall sans her mask, which was enjoyed by the nurses and oncologist as well as all the passerby. It was really awesome to know that she understood what it meant when they told her she could go without her mask!

We are still going to use caution and keep her away from crowds, watch her diet closely and wash our hands like crazy. But it’s nice to have some normalcy back. Really, really nice!

Next week will be interesting with the inpatient visit, the walk and also we have some friends coming in town. Cristina and Jacqui are two moms I know online – we ‘knew’ each other back even before we got pregnant with our children and they are all the same age. They will come in town Wednesday and stay the weekend. I’m beyond excited to finally meet them! Also. my cousin Richard from Texas called to say he’s coming to Memphis for a few days and he’s never met Emma, so that’s a big deal too.

A little funny….My mom’s been coming to the hospital for every clinic visit, and it’s soooo nice to have some help in that arena! It can be a two-person job at times. So the other day she was telling me about her wardrobe dilemma…her daily uniform is usually jeans with some sort of screen-printed T-shirt. She kept putting shirts on and taking them off because they said things like ‘Life Is Short…Eat Dessert First’ and ‘Welcome to Reality…Visit Again Soon.’ LOL Totally appropriate for most places, but could be taken the wrong way at a cancer clinic. That really struck me as funny!

That’s all for now. We are just going to sit back and enjoy a med-free, mask-free and bacteria-filled evening at home!

We had a good clinic visit today. Her ANC is up to 400 and her white blood cell count is 0.9 (it needs to be at least 1.0). Her platelets are down – 62 – but that’s still over the 50 we need. The doc didn’t seem too concerned about them dropping. I knew they were down, though. I can tell by the ‘pin pricks’ that show up on her face due to lack of clotting.

They will check her blood again tomorrow and if she’s still doing well, they’ll send us home with a bag of fluids attached to her line to hyrdrate her. She will not be allowed to eat after midnight in preparation for her spinal tap and bone marrow aspiration (they are looking for 0 chemo cells in both). Regardless of the results of the procedures, though, she will be admitted for the high-dose chemo annd have a 3-day inpatient stay. The oncologist said she’d be very surprised if her test results came back very high after we’ve seen that 0.047 in her marrow last time.

Now, if her blood isn’t where it needs to be tomorrow, they’ll check again Sunday and no matter what, she’ll go in Monday so as not to delay treatment.

We are praying for her blood to be good tomorrow so we can get this show on the road and do this over the weekend! If she gets out Monday, she’ll have a chance to get her counts back up to attend the luekemia walk on Thursday. I really, really hope she can go even if just to put in an appearance. We shall see.

Oh, I posted new pics! And I also have a video of her changing her baby’s bandage and will post it later.

I write Emma a letter every year on her birthday. I got the idea from a friend and just thought how wonderful it will be for her to read when she grows up, and I also know I will forget 99% of her childhood because all moms do, right? So I like to document things (as you can tell!) and this is one way I do that. Anyhoo, a friend reminded me of this blog posting. It is dated on her birthday, exactly one week before her diagnosis. She is such an amazing creature now with everything she has gone through, but for those of you who didn’t know her before, this is how special she was before…

At 7:25pm three years ago, you flew into my life and it has never been the same. I waited so long to have you and I often wondered what it would be like to finally be a mother. Not an aunt, big sister or stepmother. But a MOTHER. I read all the books and did all the research, but I never could have imagined…

…how it would feel to hear you say ‘Mama’ and ‘Mommy.’ One day those names will change to ‘Mom’ or ‘MOTHER!’ but please God, not just yet.

…how I would love holding you in my arms. When you were tiny, I would lay you face-down on my chest in the mornings so I could catch that extra little bit of sleep before our day began. I marveled at how small you were and imagined how just weeks before you were snuggled in my womb. Even now, I give in to your demand of ‘you hafta HODE me, Mama‘ every night as you fall asleep. And I stare in wonder at how your gangly little arms and legs fall on either side of me as I feel the not-so-gentle weight of your 31 lbs on my chest. But I don’t move you, because there will be a day that you stop asking me to ‘hode’ you.

…how amazing it would be to watch your personality grow. I tell everyone that you will either be a Wal-Mart greeter or Miss America, but I don’t know which one yet. You are a people magnet! And boy are you are defiant lately. You stand there with your hands on your hips and say ‘I’m not going to do dat! I’m NOT!’ and then come to me for hugs and kisses so I can reassure you that you could never do or say anything that would make me stop loving you. It’s like living with a mini Dr. Jekyll/Mr. Hyde and I wouldn’t trade it for the world. I laugh inside at this little person who thinks she can tell me what to do, but at the same time I think ‘man, this won’t be cute in 10 years!’

…how wonderful it would be to watch you learn to speak. You still get things wrong….you always say ‘Don’t talk louder, Mama, talk SLOWLY.‘ And you always mis-use the word ‘either.’ But I don’t correct you because it’s so unbelievably cute.

…how beautiful you would be. You are by far the most incredibly gorgeous creature I have ever laid eyes on. I love to watch you sleep – I drink in your creamy skin, your long eyelashes and that perfect little rosebud of a mouth. I had no idea that seeing my features on you would make me feel more beautiful. I used to think my eyes and mouth were nothing special until you came along.

…how intelligent you would be. You blow me away on a daily basis with the little thoughts that run through your head. Watching you learn about the world around you and make the connections between things is just incredible.

…that to be a mother is to be given a front-row seat to watch God work. From the time you were conceived to the time you were born and to now, I’m in awe of you and that I was chosen from all the women in the world to be your mother.

I will forever celebrate this day not just as the day you were born, but the day your mother was born too. Happy Birthday, Angel-Face.

Another good report today! Her platelets are still over 100 (they need to be 50 or better), her white blood cells are .7 (they need to be 1.0 or better) and her ANC is 100 (well, that’s not the 300 – 500 we’re looking for, but it’s been 0 for quite a while now so anything’s an improvement!). So she’s trucking right along toward remission and the consolidation portion of her therapy. She’ll go again Wednesday for clinic and hopefully her numbers will continue to climb.

She was just amazing today! Since her diagnosis, she’s been rather lethargic. I mean, she gets excited and has fun, but her mobility has been pretty limited. She doesn’t want to walk long distances, she has trouble climbing on/off the bed and she gets up off the floor like a pregnant woman – she literally braces herself and heaves her body up to a standing position. And her legs don’t work right…it’s like they are not connected to her hip sockets…she walks like a feeble old man. Coupled with the bad comb-over, it’s like living with a nursing home patient.

So today when she asked to take her baby doll and little stroller, I was pretty doubtful she’d make it very far. But we went to the hospital and she didn’t sit in her own stroller even one time! She wheeled that baby doll all over the hospital – and it’s quite a trek. I bet we walk at least a mile a day. I was wondering whose kid this is, because she’s sure not the one I’ve become used to lately!

I think it’s a combo of factors…she’s stopped taking the chemo for now and she’s also stopped taking the med that was managing her nerve/joint pain (apparently that one will make them lethargic at times). It’s just amazing to see her zipping around again like a normal kid. What a blessing! I’m sure she’ll have her times when she doesn’t feel well, but it gives me hope that one day she’ll be back to her old self.

Oh! And she loves to change the bandage on the doll they gave her at the hospital. It has a ‘buddy’ sewn in, just like hers. I give her the supplies and with a little help, she can go through all the steps in the proper order. It’s a pretty complicated process! But she has it down pat. Same as in the clinic. She knows exactly what they are going to do and she’ll hold her hand out for her hospital bracelet, lift her arm for the blood pressure cuff, etc. (Well, when she’s so inclined. Sometimes it’s like wrestling an octopus to get her to cooperate). Crazy how quickly this has become an everyday routine for her.

That’s all for now. Hope to have even better numbers on Wednesday!