Whatcha' Gonna Do?

I was all set to share about the party we had for Madi celebrating her end of chemotherapy.  I even had Wednesday set aside to type it all up and include her slideshow.

Then I spent all but about 2 hours away from home.  And those 2 hours weren't even back-to-back.

So.  Whatcha' gonna do when life happens?

Smile, shake your head, have a good laugh and realize it just may be one of those days you use a half tank of gas without going more than 22 miles from home at any given time.


*Madi slipped on some ice on her walk home from the bus stop Nov 18th.  She has a 'buckle fracture' in her left wrist.  She is doing well and has very little to no pain.  She'll have the cast on for 3 weeks and then a splint for another 3.*

i knew i shouldn't have said it

Last Friday saw us at the Pratt Center for a final dose of AraC.  Such a relief for us to finish up the week strong.  She was tired that day, but she was able to attend school Monday thru Thursday that week.  Madi really doesn't let the leukemia hold her back much at all!

While we were waiting for CBC results that day, I was talking with one of the other parents.  We have met so many nice people/families that are going through the same struggles we are.  While 'comparing notes' the this mother was telling me about the hospital trips, headaches, delays and other trouble her daughter was having with her treatments.  She then asked how Madi was doing.  I always cringe when this question comes up.  (We have been so very blessed with the way Madi's body has handled everything so far, so I always feel like, at some point, something bad is just waiting to happen.)  I told her that Madi's treatment was going as planned and we haven't had any hospital runs, sickness or delays- definitely answered prayers.  As soon as the information left my mouth, I thought 'now something will happen'.

Fast forward to Sunday.  Sawyer woke up with a croupy (is that a word?) cough and some labored breathing.

Monday morning, his cough was worse, he had a fever, and he was really struggling to breathe.  A trip to the pediatricians was in order after the older 3 got on the bus.  Sawyer tested negative for RSV and was put on Zpac to help clear him up.  Lots of prayers on my part that this didn't travel to anyone else.  Monday night Liv was feeling tired and cuddled up on my lap.  Yep, she had a nice little 102° fever going on.  *sigh*

Tuesday morning both Sawyer and Liv were fever free and seemed fine.  (Well, S still had his cough, but he wasn't struggling to breathe.)  We had to head in to the Pratt Center for a CBC and a weekly checkup.  Quick in and out, right?  Ha!  Madi was in need of platelets.  No biggie, really.  It just adds about 2 hours to our time, so we got the platelets ordered and picked out a couple of games.

A little later the nurse came back to let us know that her hemoglobin was down to 8.5, meaning she would need blood soon, but we could put it off a couple of days.  Also, Madi was due for her second round of IVIG.  Blood takes about 2 hours.  IVIG takes about 3 to 4 hours.  Total of 6 hours since they have to do one at a time incase of a reaction.  I decided to push these off until Friday when I knew Kevin would be off work and I could go solo with Madi.

We always try to keep an eye on Madeline's temperature.  It's one of our first indicators that something is going on in her body that isn't right.  We left the Cancer Center with a last temperature check of 99°.  As she sat staring at her plate at supper time Tuesday night, I realized I should probably check and see where she was.  Quick trip to Walgreens to get a new thermometer for Madi, since I used the other on Sawyer and Liv, and we discover she is at 101.8°.  Wait a few minutes for a second check and she is at 102°.  Time to call the doctor.

Okay,  I'm getting tired of typing.....Long story short time.

We headed to the ER to get a blood culture and spend the night in the hospital.  They started her on antibiotics and were also able to get the unit of blood in her system that night while she slept.  The next day she got a chest xray and another CBC.  Kevin and I switched out that night so I could get some sleep.  (Madi has a tendency to go to the bathroom a lot when hooked up to IV fluids - day and night.)  Thursday, we were given the green light to go home right after lunch.

Did you know she didn't have a fever the whole time she was at the hospital?  A little frustrating, but I wouldn't change what we did.  All of it was for the best for Madi, and that's all that matters.

We are keeping a close watch on her now.  Today she was able to go in for her scheduled IVIG therapy and that should help her immune system a lot.  Next week we will go in for a weekly CBC and I'm pretty sure she will need platelets again.  I'm just very thankful that these needs can be met whenever they come up.  Plus, even though she had to spend some time in the hospital, she is still on track for treatments in two weeks to start up again.

She continues to be in good spirits as the day goes on.  Hopefully, she will be able to have a full week of school next week.

Keep up the prayers - we appreciate them so much!!

milestones

Madi has hit a few milestones at this point -port implant, lumbar punctures, bone marrow samples, coming home from hospital, the end of steroids - but, Thursday marked the end of her first 28 days.  To mark this grand day in Madi's life, she got to get a lumbar puncture and bone marrow sampling.  Good times, huh?!

Here she is all hooked up to IV fluids and Vincrystine.  I believe there was a movie playing and that blanket was in the warmer before they brought it to her.  We get to the hospital test and treatment area an hour before the scheduled procedure.  Plenty of time to get her prepped and ready for Dr. Rob.  Since she didn't sleep well the night before, she fell asleep and stayed asleep as she was wheeled away.

Madi can't eat the morning of these procedures.  Makes her a bit grumpy.  So, we packed a couple of pieces of banana cake to make things all better afterward and have a more comfortable ride home. (I really need to do something different for a travel pillow.)

We will head in to the doctor's  office on Tuesday afternoon to get all the result and find out what the next step will be in Madi's treatment.  We did get good results Thursday on her CBC : Hemoglobin 11.5, platelets 90K and ANC 1260.

Many people ask us how things are going.  I thought I would take the time to let everyone know how our days usually go.  This isn't an 'oh, woe is me' thing, just a realistic picture of where we are right now.

The first part of our morning is consumed with getting the older 2 ready for school and out to the bus by 8:30.  I fill my day with the normal taking care of kids and house that any other mother would do.  In addition to that, is taking care of Madi.  It's a lot like having a 43 lbs new born right now.  She lets me know when she is hungry and I get her food - sometimes several plates of food.  She lets me know when she needs to go to the bathroom and I help her get there - most times I carry her, sometimes she walks.  She lets me know when her stomach hurts and what she needs me to do to help her manage the pain (time on my lap, tummy rub or foot rub).  I help her get back and forth to the bathroom several times at night, as well.  I'm grateful Kevin was thinking ahead when we got home from the hospital and put an extra bed in Madi's room for me.  It makes it much easier for me to take care of her and not disturb Kevin's sleep during the work week.

Life isn't bad at this point.  We could be dealing with so much worse.  Our biggest frustration right now is having to watch Madi go through everything.  She is such a strong little girl, though, and is handling this phenomenally.  Now that she is off steroids we are starting to see more and more of her personality come back as each day passes.  Such a blessing!

Since I have to be available for Madi and can't just head out the door to play with the little ones,  I've been so thankful for the deck Kevin put on the back of our home.  Bike riding and outdoor play is much easier with this space available to us.  I've even lightened up a bit on some of the indoor play.

Next will be a basketball goal somewhere in the kitchen.  :)

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!!