a 'normal' week

We have been trying to find a balance in our lives between taking care of a child who is ill and keeping things normal for everyone.

Going to the park I found by taking a wrong turn.  We spent some time swinging...

 and then sitting on Papaw's lap on the bench after my legs fell asleep in the swing.

 Trips to the mall.

 Getting a new hat and new doll can really wear a person out.

 The other two kids were still wound up and ready for the next stop.

Yesterday (Thursday) was our treatment day.  She is really doing a good job adjusting to the routine at the doctor's office.  We check in, wait for them to have a room ready, prep and then access the port, blood draw, chemo in, wait for blood results and then either get necessary blood/platelets or de-access the port.  She is still afraid of the needle hurting when initially accessing the port, even though she tells us afterward that it didn't hurt.  She also DOESN'T like anything sticky on her skin - no tape, no band-aids, not even Press 'n Seal.  We can avoid most of the sticky stuff, but the needle is a must.  Fortunately, (or unfortunately) she will get used to this with time.

According to yesterday's blood results, Madi is no longer neutropenic.  She scored a 527 on that scale!  A nice change for her to be able to eat all the fresh fruits she loves.  We will also need to head back in on Monday to make sure her hemoglobin and platelet numbers are where they should be in preparation for her lumbar puncture and bone marrow sample procedure on Oct. 4th.

Keep praying!

it's a good day

Madi had her third treatment today.  It's really hard to believe it's been a little over 3 weeks since we got the diagnosis.  Although we still have a long way to go on this journey, it's nice that time hasn't seemed to slow down or drag along.

There's not a lot to report today.  (A good thing in my mind!)  She was able to get her Vincristine -which only takes a minute or so to inject.  We then stuck around for a little over an hour to get the blood results to see what her numbers were.  Good news in that department, too!

WBC: 0.5
Hgb: 9.4
Plts: 90
ANC: 45
(check out the cheat sheet page to see what is normal for her age)

Numbers aren't the best, but they are good for Madi.  Her ANC went from 0 to 45 in just a couple of days.  We need it to be above 500 for her to be off her neutropenic diet.  It's moving the right direction, though.

One big hurdle we have yet to overcome is the initial port accessing.  Can't really blame a 5 yr old for being upset when someone comes at them with a needle.  The doctor's office supplies us with linocaine cream to numb the area.  Now it's just a matter of getting over the mental aspect.  That will just take time.

So..... Keep praying!  We appreciate everyone helping us through this.  And since every post needs a picture....

a little blood check

We are constantly having to get Madi's blood checked to make sure numbers for hemoglobin, platelets, red blood cells and several other things are at levels acceptable for treatment.  Yesterday was one of those days.  It was also the first time I had the two littlest munchkins with me.  The office is set up like a child's dream.  As time goes on, I'm sure the kids will get bored; but for now, they had a blast.

Since her platelet level was low Thursday prior to her LP, Dr. Rob wanted us in yesterday for a quick check.  Her numbers went from 32k to 6k in just 4 days.  Platelets were a must!  Unfortunately, the blood bank was low and we had a bit of a wait until they could get some to us.  No bit deal.  Madi sacked out with a pillow and warm blanket.

 Her position didn't change much after we got her hooked up. :)  It really made it nice for her to be able to just sleep through most of the day.  (A little funny for you all - The platelets in the bag are a yellow color.  Sawyer asked why they were putting tinkle in Madi as the nurse was connecting her lines. Even the nurse got a good chuckle.  Ha!)

None of Madi's numbers fall within the normal range.  Most are just at a good level for the situation.  The other thing we really have to keep an eye on right now is her number of neutrophils.  When we entered the hospital, she was at 40.  She is now sporting a big fat 0.  While this is a 'bad' thing, we are very grateful cold and flu season isn't in full swing.  (I'm telling you, people - life is all about perspective!)  She has to adhere to a special diet and we have to watch for fever and cold symptoms, but nothing more.

Since we are headed back in on Thursday, today is a pj wearin', movie watchin', book readin', coffee drinkin' kinda day.  I feel like we have been going somewhere constantly (even if that isn't really the case).  Grandma and Grandpa came for a visit and helped us keep up with the house work and entertain the kiddos.  Nonnie is going to visit Wednesday and Papaw will be coming a day or so later.  My kids have such wonderful grandparent!

L is for ......

(originally posted on this too)

School has started and we've been trying to get into the swing of things.  You know - waking up at a good time, getting dressed instead of wearing our pjs or swim clothes all day, keeping up on the laundry, signing papers that need to be returned and getting that nasty homework done on time.

I've been looking forward to having 3 (!) kids in school this year.  Hard to believe!  Do you know how easy 2 kids can be?!?  I have a list of projects that just keeps getting longer and longer.  Things like painting and rooms and presents and just miscellaneous fun 'stuff' to do.

With our third child in kindergarden this year, we've been getting to see all the 'new' things through her eyes.  She brings home her paper from school and shows us all the 'homework' she gets to do.  We get to hear about her teacher and all the new friends she gets to make.  We get to learn that L is for things like Lollipop, Letter, Light and Lemon.

On Tuesday Sept. 4th, my husband and I learned that L is also for Leukemia.

Madi - 1 week before diagnosis

Our beautiful little kindergardener had some blood work done that morning to find out the cause of the bruising and lethargy she was dealing with.  By 2 pm we had a call from our pediatrician telling us to go meet with a pediatric oncologist and be prepared to be admitted to the local hospital.

A whirlwind started as soon as we were finally admitted to the hospital.  Thankfully, we were blessed with some wonderful and understanding nurses.  One nurse in particular, Ms. Janet, became Madi's buddy and cared for her in more ways than just making sure medicine was taken on time and vitals were as they should be.

All these new, and somewhat scary, situations and experiences for our little girl to have to endure.  Being poked and prodded by complete strangers, being carted to different treatment/procedure rooms, having a port put in, having to take 'yucky' medicine and just feeling crummy overall really started to take a toll on her by Friday.  That morning she looked at me after taking her medicine and said, "I really don't want to do this anymore."

We have been home since Sunday and coming home never seemed sweeter.  Our lives are busy with one more thing added to the mix, but we have some wonderful friends, family and even strangers surrounding us with love and support.

The point of this post is not to make you feel sorry for us.  While this isn't the diagnosis we wanted, the prognosis is excellent.  We found through testing that Madi has ALL, a very common and treatable form of Leukemia.  Her age, gender and several other factors are in her favor.  She is responding well to treatment so far and is having few side effects.

The point of this post is to ask for prayers.  Many, many prayers.

We are keeping our minds on the positives and not dwelling on the negatives.  We really are okay.  While we know there are many rough days ahead, focusing only on the bad will make this whole experience even worse.  Kevin and I are taking any opportunity and making sure something is gained or learned by some or all of the kids.  Even Kevin and I are growing in many ways at this time.  Most importantly, Madi is learning at a very young age to let her light shine.

So, projects will come - eventually.  Once we get into our new 'normal', I'm hoping to still do projects and crafts to help keep me sane during this time.  (Kevin would tell you I lost 'it' a looonnggg time ago, though.)  I've got several in progress now and just need to finish up - my life's story.

Keep us in your prayers!

first blood draw

(Sept 11)
As many of you know, Madi is now home. She was so excited to be leaving the hospital!

She is happy to be home, but tires easily. Right now our big issue is getting her to take her meds without fighting the issue, but it has gotten better.

Today we go in for some blood tests to make sure numbers are where they need to be. I'm hoping to get a better idea of our schedule in the coming weeks, t

oo. Keep praying. I don't see anything being a problem today other than when the nurses come in with the needles. We have some cream to put on her skin to numb the area, but that won't make much difference psychologically to a 5 yr old.

home

(Sept 9)
Madi got to come home today!!! It was great to see everyone at services tonight while Daddy played nurse tonight. She's pretty clingy tonight and fell asleep on my lap, but she was happy to get home earlier. Thanks for everything!!!

feelin' good

(Sept 8)

Thanks for all the prayers! Madi is doing really well today. She is sleeping now, but has been out wondering the halls a couple of times and riding (playing) in the wheelchair we have available to us. She's been smiling, joking around and acting more like our Madi than any other day. Even better, the doctor is going to release her tomorrow afternoon instead of Monday! Please keep lifting her up in prayer. We'll have some adjusting to do when we get home. Also, she has some body aches from the meds and lumbar puncture. We will be back on Tuesday for treatments and Thursday for another lumbar puncture. Love to u all!

results

(Sept 6)
Best case possible for Madi. It is ALL (Acute Lymphoblastic Leukemia). They r going to start treatment tonight and Lord willing we will be going home on Monday. Kevin is staying the night at the hospital tonight so I can get a better night's sleep and get the older 2 ready for picture day at school tomorrow. Keep the prayers going!! 

ups and downs

(Sept 6)
Good morning! Our night was long - or short depending on how you look at it. :) Madi is starting to feel sore and bruised from the procedures yesterday so that adds a new angle to things. An ice pack on her hip seems to be helping, though. Bright side - Her kidneys are functioning well! :) She has been fighting a fever since yesterday afternoon. This is normal/expected and they are treating

her with an antibiotic for infection and giving her tylenol. The plan today is to have a port put in around 11:30 am by one of the hospital surgeons. After that is in, they will remove her arm IV (hopefully while she is still asleep). We should hear sometime today the results of the lumbar puncture and bone marrow. Those results will determine our course of action in treating Madi. Please pray specifically for the doctors treating her, her fever to go away and that some of her comfort can be eased if not removed. Thanks for all the prayers so far and all the support and love being poured on us. We are confident and faithful that the outcome of all of this will be good, it's just the bumps in the road that will make it more difficult as we go along. We have a powerful God on our side taking care of Madi!!

first procedure

(Sept 5)
Madi did great with the bone marrow and lumbar puncture! Has had no discomfort at all. She is out exploring (trying to find the fish tank) after beating me in a game of 'go fish'. She will have the port put in tomorrow mid-morning and then have the IV removed. Thank you all so much for the love and support. We are trying to keep the conversations as positive as possible for the kids' sakes as well as our own. :) Keep the prayers going!

it starts here

(Sept 4)
Okay. We had quite an interesting day yesterday. I took Madi (our third child) in to have some blood work because of some bruising she was experiencing. That was at 11 am and a little after 2 pm the ped. called to let me know we needed to see a pediatric oncologist. Madi was diagnosed with leukemia and admitted to St. Johns hospital here in St. Louis to receive 2 units of blood and a bag of pl

atelets to get her iron and other numbers where they needed to be. Today she will have a bone marrow sample taken and also a spinal tap done. Sometime in the next couple of days she will have a port put in and have her first treatment. We won't have a lot of answers until later tomorrow. Everything is looking as good as possible at this point, tho. She is responding well and has a good attitude. Kevin and I are holding up pretty well at this point. For those of you how know us well, you know we take things in stride. This seems to be no different. No reason to borrow trouble. There is a long road ahead, but we have a powerful God to see us through and an amazing support system in our family and friends. Pray and pray again!!