An event worthy of a post

Reese is officially tubie-free!!  (no more central line) The nurses refer to them as "tubies" when talking to peds patients.  I was nervous a few days before the line came out because Reese had been a little grumpy and had been having diarrhea/vomiting more frequently after her infusion on Tuesday.  I was afraid that she might have nausea after anesthesia as she has in the past.  Strangely,  she hasn't!  In fact, she has actually been happier since the line has come out.  She only required 3 doses of pain meds and she has otherwise been great!

She has been active and bearing weight on her arms and legs more.  Actually straightening her legs and standing (while we support her).  We have been able to get her feeding volumes up (the amount of formula she is getting) as well so that is exciting.  We are now out to monthly clinic visits and she has been turned back over to her neuro-oncologist (not her stem cell transplant doctors).  The preliminary immune results came back and the immune cells are present but in low numbers.  We don't have the results yet that will tell us how well the cells are functioning (which is really the important part).  It's possible that some of the restrictions could be lightened (which would be great), but we won't know that for a little while longer.  In 2-3 months, she will have to undergo more testing to see how she is recovering.  In the meantime, we have to keep her from getting sick (by precautions and prayer!)

Another fantastic thing is that Reese's hearing was normal (for the pitches/frequencies tested by this particular type of test).  She had the same test after her first cycle of chemo and everything was stable after 4 additional rounds plus a stem cell transplant round.  There was a 25% chance of hearing loss so we are so thankful for this. This is one of the things we have prayed for.  Reese LOVES music and we hoped that she would be able to fully appreciate it someday.  She may still lack some of the highest pitches that weren't tested but none of the pitches that are required for speech or every day interactions.

After Reese's line was removed, she had to leave the bandaid in place for 2 days.  Tonight, we got to remove the bandaid and she is officially adhesive free for the first time in 10 months! Whew-hoo!!  She still has her Gtube for now and her shunt (which is completely under the skin).  She has to wait 5 days to bathe or submerge the stitches (there are 2) but we can't wait to bathe her in a tub (and not with special wipes!)

Below are a few photographs documenting some "lasts" of the week and a few "firsts"!

Last flush of the central line the night before surgery

One last night with my central line!

Now you see it...

Now you don't!

First time Reese "helped" put Charlotte to bed 

The big reveal (the most exciting bandaid removal ever!)

Reese takes a peek....

And decides she LOVES it! :-)

16 months old!

Yesterday, my babies turned 16 months old.  It's really bizarre how fast (and slow) it happened.  Charlotte was officially 3 1/2 years a few days before that.  I remember  nursing her for the last time on her 16 month birthday and thinking--"This is it.  She doesn't need me for this anymore." It was an ordinary moment like all of the ones before, but it was different because I knew it was the last time.  I knew that there were other exciting things ahead but it was a "last time" and I wanted to remember it. (Too bad I'm not sentimental at all...ha!)  2 months later I was pregnant with twins!  So when they turned 16 months, I looked at them and thought about that day when Charlotte turned 16 months old.  It feels strange to put the memory in context like that.  I know when the twins turn 2 years 2 months, I will think about Charlotte on the day they were born.  Despite my sentimentality, I spend a lot of days looking forward to the days when my kids will not need me to wipe their bottoms, take them to the potty, get their food, tell them to stop climbing on the furniture (again), plan things around naps and meals, etc etc.  At the same time, I realize that this time is passing so quickly (though the days seem slow) and I don't want to miss ANYTHING!  I don't want to regret anything with them, but I know I probably will because I won't get it all right.  Parenting is a humbling experience and having a major health crisis in your child just makes you realize all the more how "not in control" you really are...and how scary the world is...how many things threaten to harm your child.  It can be so overwhelming and crushing at times but I know that I have to lean ever harder onto God's chest and trust Him to protect my kids, to give me the grace to accept the hard things that happen or the less than ideal situations we find ourselves in.  (I have to apply Philipians 4:4-9 a lot)

In that same vein, this upcoming week is a big one for Reese (and one we have been waiting for).  She is having yet another surgery this week.  I will again walk into a pre-op area and hand my child over into the arms of a nurse I do not know, to be operated on by a surgical team that I do not know (though she will have the same pediatric surgeon).  I have been Reese's nearly constant medical guardian, watching/questioning everything that is done, etc for the last 10-11 months and I will have to let her go into an operating room without my watchful eye being there.  When she was first diagnosed, I feel like I gladly handed her over to those who could fix her.  We really had no choice.  Now, it's much harder because NO ONE knows her like we do.....  BUT this is a good surgery because it is a normalizing procedure...her central line removal!  It's one less thing that could get infected and it means she no longer needs it for chemo or IV nutrition/fluids!  After it is removed, she will have to be stuck for blood draws but these will be less frequent.  Her surgery will be Friday.  She will also have a hearing test while under anesthesia.  On Tuesday (before her surgery), she will get one last IV infusion in clinic and have labs drawn, etc.  Her first round of immune function tests will be done at that time.  It is very unlikely that she will be "cleared" from an immune standpoint this early, but it would be REALLY nice if she was!  With all of this in mind, I have celebrated some "lasts" this week ( at least what we hope will be lasts).  Her home health nurse came out for probably the last time to help with Reese's 2nd to last dressing change.  (Last one will be done in clinic on Tuesday).  I changed the cap on her central line for the last time yesterday. (Last one will also be done in clinic on Tuesday--by a nurse).  I look forward to other lasts too...the last Gtube feeding...the last day that she can't crawl/walk, etc.  For now, I wrestle to enjoy/savor the lasts without longing for them to arrive too quickly (bc it means that our kids are growing up too fast).

Please pray with us for Reese's successful, uncomplicated surgery on Friday, July 13.  Please pray that her hearing test would come back normal.  Please also pray for her clinic appt on Tuesday, the 10th.  She will get an infusion, have labs, etc.  Though it isn't really expected, please pray that we would be pleasantly surprised by how good Reese's immune function is at this point.  (I'm not sure when we will get those results).  Thanks for reading, praying with us and for us, and loving our family!

Daddy had all the kiddies on the couch this am, waking up to some "Dinosaur Train" (I promise we don't watch TV all the time but our photos make us look like we never stop!  TV,  eating, and sleeping are the only activities that keep our kids mostly still for photos :)

Reese acting like she loves "eating" time. hahah..don't be fooled.

Charlotte in my rocking chair that I had as a little girl.

More couch time together.

Charlotte had a fun play date with her friend Evie this Friday.  She  looked at the clock all day, waiting for the little hand to point to 5, so she could go!  It's so funny to listen to them talk to each other now!

Day 90

Tomorrow is Day 90 which means it has been 3 months since Reese's transplant.  I certainly am thankful for every day we put between her and her transplant...and her chemo....and her surgery...and her diagnosis.  Multiple times in the last several months, she has seen medical staff (docs, nurses, etc) who saw her in the beginning and have marveled at her progress and personality.  We have heard a lot of "She has exceeded our expectations" or "I never expected her to look this good now when we first met her"...etc etc..  So though I "forget" (I could never REALLY forget but you get lost in the every day and the details of what she looked like when merge together a little) how far she has come sometimes, I praise God for the many blessings he has given us during this storm.  We are still bumping along a lot of the time and there are still a lot of things to get through, but we are gradually trying to "normalize" our life despite the fact that we are isolated a bit.

Nonetheless, I recognize that I will NEVER be the same.  This has changed me.  I no longer have the invincibility complex of youth.  Reese's tumor is so rare (presentation, age, pathology, you name it) that we don't even have a real name for it.  It was initially called an ependymoma, but second-opinions on the path decided that it didn't fit perfectly so now she has "a high-grade, malignant neuroepithelial tumor." I have tried to read every medical journal out there and have not found an article that exactly matches (or even gets close) Reese's diagnosis.  She had several side effects during treatment that were so rare that docs barely even mention them when discussing risks.  We heard several times, "we have never seen this happen before..."  While in school/residency, we always dreaded taking care of doctor's/nurse's kids because inevitably crazy stuff happened with them.  Reese has fit the bill in some ways!  I know that God has carried us through every hurdle and obstacle.  I felt in my heart that she was going to pull through each one, but my heart spent a lot of time beating way too fast.  Throughout, we have had to trust God for Reese's life and well-being and it has truly been a walk by faith...not being able to see one step ahead of us at some times.  In my limited mind, I think he allowed some things to be unknown or hard because He wanted to keep us depending on Him.

This last year has taken its toll on our bodies, our minds, emotions, etc.  We are adjusting now, trying to hit a new stride.  I'm working sporadically as needed (just started last week) and Brian is trying to finish out his last year of fellowship/research program strong.  We are doing a juggling act making sure all the kids are covered when anyone leaves the house (someone is always here with Reese). It's hard a lot of the time.  All our kids are needy of us physically and emotionally so there isn't a lot of downtime.

As I said before, something like this changes you.  I will never be "Mindy, mom of three." I am now a "cancer mom." My brain processes everything differently now.  I had a unique view going in because of my medical background which separated me somewhat from others that I met going through the same thing.  Also the fact that my child was an infant...our challenges looked different than the older, verbal, walking kids on the units.  I have seen God's hand during Reese's journey, providing/answering in miraculous ways. Providing before we knew to ask.  I have just recently spent time asking myself, "How does God want me to redeem Reese's cancer?" How do I give this to God and allow Him to make all things beautiful in His time? Obviously, Reese is doing well and I thank Him for that.  I just pray that the changes in me are for His Glory...and that our family will be different and better because of this.  And that He will show us how to love others and be the hands/feet of Christ to them....

On a total side note, today I was home with Reese and Philip while Brian took Charlotte for her first swim of the summer.  I was sitting in the floor with Reese and Philip kept coming and literally jumping/leaping/falling between us into my arms.  He's a mischievous, get-into-everything-he-can boy, but he's a lover too.  He wanted me to cuddle him and tickle him (because I was paying too much attention to Reese). Reese hates pacis and firmly refuses them.  However, she saw the paci in Philip's mouth today as he lounged back in my arms between the two of us.  The fiercest look of determination came over her face as she pegged him down with one arm and went for his paci with the other.  He was giggling because the slightest touch tickles him.  I kept batting her hand away, literally fighting her to keep her from taking his paci out (supposed to protect her from germs...hahah). She would not give it up.  Finally, I let her take it one time (sanitizer ready) to see what she would do with it.  She just turned it over in her hands and played with it a little.  This burst of "fight" I have not seen in her much since her diagnosis.  Determination, yes, but aggressive fight, not really.  Before she was diagnosed (sub-5 months), I always said that she was going to be a strong woman like her big sister and I was going to have worry about Philip being taken advantage of more than the girls. During her recovery, she has been strong but sweet, happy, content to play with whatever.  Today, I saw a competitive streak....like I used to see.  Can't wait to see how she continues to blossom in the coming months.  In the end, Philip's sisters are going to toughen him more than any brothers could.  He's rarely cries when he falls but he wrestles with his big sister daily.  Love watching these little people grow!

We go back to clinic on Tuesday and have to make some decisions soon about Reese's line.  She is doing great..vomiting still once or twice a day but getting higher amounts of formula every day.  Her major issue now is diarrhea which started a week and a half ago.  Her bottom is breaking down again so please pray that this resolves soon.  Her brother and sis have had runny noses for the same amount of time so hopeful that this is just something simple that will resolve.  Reese doesn't have a fully functional immune system so anything can be scary sometimes.  Please continue to pray for her feeding and her development.  She is a dancing machine these days and gets mad if she doesn't get to sit up all the time.
She doesn't like to bear a lot of weight in crawling position or standing position but we are working on it!

And as always please pray for those MRIs. Her next will be August 6!

Airplanes, surprises, chicken fingers and Krispy Kremes

One day after my last post, I had my first long afternoon home with all 3 kiddos ALONE.  After a few potty mishaps, tantrums, attempts to keep everyone from injury, etc while taking care of Reese, I must have looked particularly haggard when Brian arrived home.  Both of us miss "normal" life stuff, like traveling, eating out as a complete family, going to church as a complete family, going for a walk, etc, etc.      Since we have transitioned out of inpatient life and I am home and inside almost every day, I have felt a mixed bag of things...."crazy" being one of them.  I was also stressed about finding a new babysitter to help me in the mornings after our awesome babysitter is finished working with us at the beginning of August. (Please pray for that for us!)  I had been trying to look online while the kids played quietly....hahahah

So Brian looked at me and said, "Why don't you go to your sister's baby shower this weekend?" (As in my sister in Georgia, 650+miles from our home Georgia).  I laughed initially but within an hour, we had a rough sketch of how this could work.  After some debate, it was decided that Philip could fly free with me, Brian's mom could pick me up at the airport, I could surprise my whole family on Saturday morning and I could fly back on Sunday.

We had Reese's clinic appt on Tuesday (the day after we hatched this crazy plan), so we decided to wait to make sure everything was good with her before I booked a flight.  We proceeded to have our best clinic appt in a long time because Reese had gained an entire POUND in one week and it was decided to stop her TPN for a week to see how she would do.  We were also given clearance to stop her fluconazole (a preventative medicine for transplant patients) on Sunday (Day 75 post transplant). If you've ever been chronically sick or taken care of a sick person, it is ALWAYS an exciting thing to simplify medications or step down the intensity of therapies (especially when it is done because the person is getting better).

After the appt, we decided that I was going.  Sounds easy, but this required lots of last minute booking of flights, moving of appts, Brian getting things covered at work so he could be home all weekend, etc.  After a 3 hour frenzy, I had a flight, Brian was covered, I had a ride home from the airport and a fun weekend planned.

Philip and I began our journey by getting up at 515am and going to the airport on Friday. I drove myself and rode the shuttle, etc.... something I rarely do alone and especially not with a child.  (I feel like a real woman now). Philip was so confused and overwhelmed but certainly enjoyed all the attention that a cute redheaded toddler receives.  Since Reese's diagnosis when they were 5 months old, he has ALWAYS slept in his bed for at least 2 naps a day and overnight.  He only leaves the house for 4 hours max at a time and he almost never misses a nap or a meal.  He eats, sleeps and plays at the same time.  He has never been apart from Charlotte and/or Reese for more than an hour or so.  He always has several familiar faces around him.  He is the king of his toys and his environment (as long as princess Charlotte isn't dominating...which is actually fairly often...ha).  All of these new sights and sounds were a bit crazy for him.  Charlotte had been on an airplane at least 5 times by the time she was his age and we were always dragging her around during her nap times, making her sleep in carseats, etc.  She slept in a pack in play, etc.

Philip hydrating for the flight

Long story short, Philip and I had some adventures.  I enjoyed one on one time with my little boy that usually gets taken care of by someone who is helping me because he just needs to be fed and loved (and kept from jumping off furniture). Charlotte demands my attention and Reese needs special care so this was a fun time for me to be with only him.  Philip on right, preparing equipment for takeoff.

Upon landing, Brian's mom picked us up and we headed straight to Krispy Kreme.  She is my partner in dessert crime.  This may be the secret to our good relationship :) I didn't even have to say anything because she knew.  We missed the "hot" sign by about 20 minutes but they were still delish!  From there, it was Zaxby's for lunch.  (I really did come to GA to see family but I really enjoyed all the fringe benefits.. ;)  We had fun hanging out and I headed to my hometown the next morning....Again BRIGHT and EARLY.  Philip was very freaked out by sleeping in a pack in play in a strange place so I cannot say sleep was one of the highlights of my trip...but I digress.

I surprised both sisters, my mom, my grandmother, and a whole host of aunts and cousins.  It was great to see them.  I got to see both my new nephews (one in each of my sister's tummies) due a month apart, hang out with my nearly 2 year old nephew and let Philip explore and enjoy where I grew up.  He warmed up to everyone fairly quickly and had a good time.

We headed back to Atlanta for our flight on Sunday and ended up being delayed by 2 hours on our trip home.  Fortunately, Brian's mom was with me so we just had an extended time at the airport and Philip was a champ.  He slept wonderfully on the plane, barely woke up for his transfer to the stroller and carseat and we made it home just after 11pm.  Everyone was super nice to the tired looking woman with a  baby (me), including an airline worker who helped me to my seat without being asked, folding my stroller and carrying my bag, the nice lady next to us who helped me off the plane and the people waiting for the shuttle who helped me get my stroller on the bus.

Back home at the ranch, Brian could not leave the house because Reese can't leave.  Charlotte enjoyed lots of arts and crafts (her daddy is better at this than me actually), a few good disney movies, and probably a few "special treats."  Reese was an ALL STAR and only got sick once the whole time I was gone....which has not happened in a LONG time.  Of course, she got sick 15 minutes after I got home (I wasn't even touching her) so Brian now blames me ;)  She was able to increase the volume of her feeds as well.  She has continued to do well today.  I'm excited to see how much she weighs tomorrow at clinic.

                                                                        Charlotte's artwork

Daddy's girls

Tomorrow she will get some long infusions of meds, etc. and I'm hopeful that that will go well.

I'm really tired from traveling over a short period of time with a child and stepping back into life today, but I'm glad for the chance to get to do something fun this weekend.  Very thankful for my husband's initiation of this and his willingness to stay inside for 3 long days with our 2 girls so I could go.


HIGHLIGHTS/PIX FROM TRIP BELOW.  KRISPY KREMES NOT PICTURED BECAUSE I DIDN'T WASTE TIME WITH THE CAMERA....(HA!)

Philip walking the same path that Charlotte always does when she comes to visit Gran and Pepaw.
She wasn't even there to show him how.  I guess they have an explorer gene.  

Philip finally warmed up at the shower and making his rounds to meet all the ladies.

Looking up to his big cousin.

Thoroughly enjoying hanging out with the guys and looking at the big machines.

Talking to Pepaw

Hanging out with Aunts and Uncles

Cousins

All of 4 of my parents' grandsons...2 in utero..

Loving Granny

Granny and Papa

And now I remember.....

So after being home for 5 weeks (as of Thursday), I remember why I have never started a blog.   Time to sit down and write is nearly non-existent!  It has been really nice to sleep in our own beds and not have vital signs done every 4 hours around the clock.  Nonetheless, I'm not sure that our sleep or rest has improved that much.

Day to day, it's hard to see the improvement in Reese because it is so gradual.  Looking back at our discharge date, Reese is tolerating a LOT more formula in her tummy.  Her TPN has been weaned back a little and she has gained a little bit of weight.  We are still dealing with the same old vomiting though which  *ALMOST* feels normal because we have dealt with it so constantly since September.  We always have a stack of kitchen towels nearby and we can continue conversations while she gets sick because it's the way it has been for so long.

We did recently switch back to her old formula which is less broken down and higher calorie.  This is a good step because we can hopefully move more quickly towards getting her off of TPN.  Every change we make though is sometimes a step backwards because she has to adjust, etc.  I'm very hopeful that we are a few weeks away from saying adios to her TPN.  Once she is off TPN, we can start talking about getting her central line out which would be a huge move towards freedom for Reese.  Currently, she can't take a bath because of it and she hates having the dressing changed every week.  It is also another thing that she has to deal with while trying to catch up on all her milestones.  (Imagine having a tube coming out of your chest and being stuck under your arm, etc, when you're trying to re-learn rolling over, etc.

Reese's hair started sprouting on Mother's Day and currently, it appears that it's going to be very dark....which is funny bc she had red hair before.  We had heard about this phenomenon after chemo, especially transplant chemo.  We are interested to see what she will look like once it's all in.  She looks precious with thick eyelashes and dainty little eyebrows.  Her hair is probably a quarter inch long right now.  Across the room, it looks like a 5 o'clock shadow on a man who hasn't shaved ;) We've jokingly been calling her "Snow White" (we talk a lot of princess around here with our 3 year old daughter currently in full-fledged princess mode) because she has ruby red lips, skin as white as snow and hair as dark as ebony.  We were thinking she was going to be an Ariel before :)

Her physical, occupational and developmental therapies finally got started this week.  Without their help though, she has started rolling over some and can almost sit up from lying on her back (she has strong abs!).  She has tried to adapt because of her not liking to be on her tummy so instead of trying to sit up from a tummy position, she tries so hard to get up from her back.  We are working with her to strengthen her arms, shoulders, back and legs so she can stand and crawl, etc.  The rolling is getting a lot better and she is a good sitter now.  Other recent tricks are peek a boo, some more sounds, "Yay", clapping, etc.  She has even been eating tiny tiny tastes of babyfood.

My cousin, Morgan, who has been with us this whole year, moved back home today.  So we are truly on our own now.  Morgan has been a tremendous help to us this year and our kids love her.  Charlotte keeps insisting that she's just going to GA and will be "right back."  We will all miss her and are so thankful for her servant's heart towards us this year.  She has served and loved us sacrificially this year and we enjoyed having her here with us.  Charlotte and Philip have some cool dance moves, songs, games, etc thanks to her :)

Probably the most frustrating thing right now is the final potty training push with Charlotte.  She is seriously the most stubborn 3 year old in the world.  I know there are probably some out there who would advocate for their own adorable preschooler for this title but Charlotte definitely wins top prize.  Trust me.  The mold has been broken.  I honestly think her main goal for most things is to make sure that all of the "tricks" of parenting that her mommy learned as a pediatrician could be blown out of the water.  My bag of tricks is empty on this one.  We  basically have at least 5 fights a day to get her in the bathroom.  At least a few trips result in wet hair (yes, from reaching into the toilet), water on the floor, paper on the floor, wet pants, or worse.  Oh, well :)

Philip spent the first 5 months of his life, lying flat and smiling.  I seriously thought it would be good if he considered walking by the age of 2 years.  Shortly thereafter, he decided to sit, crawl, stand, cruise, walk, run and dive-bomb off of furniture.  Seriously, he jumps off headfirst if there is anyone anywhere near him.  He climbs stairs, flies down slides, etc.  No fear....Charlotte was the same way.  It's cool to say your kid is agile and coordinated, etc, but it is NOT easy to parent.  Whatever happened to docile little kids who sit quietly reading books? hahah not in my house!  He has also decided at the tender age of 14 months that he no longer likes the baby swing.  He wants to sit in the big one...

Today, we literally turned our backs for 5 seconds while Charlotte and Philip looked out the back screen door (as they do frequently). I walked around the corner to check on Reese and heard Brian yell for Charlotte.  Both kids were on the back deck.  Charlotte had opened the door (holding it open for her brother, how sweet...ha) and Philip had crawled out/walked out onto the deck.  Charlotte had also managed to get her grocery cart full of babies out there!  Needless to say, Charlotte has been educated on NOT going outside without permission and we may need to put a tracker on Philip.

I'm rambling a bit because I've written this in 5-6 increments of time.  Thankful for everyone's encouragement to us.  Please continue to pray for Reese and all of us as we try to rehabilitate her back to a place where she can do all the normal things her sibs do.  It will take awhile but we are hopeful that she can walk through the door in kindergarten with her brother.  We hope that next summer, we will get to go on a fun trip with all kids eating food by mouth.  In some ways, this part is harder than the intense part because it is slow and life is happening all around us while we get through the tasks of each day.  Reese can't go outside or go out except to the clinic.  We also have to screen visitors and make sure no one is sick etc.  This limits kids who can visit and Charlotte is especially sad about the lack of little people in her life.  Please also pray for Reese's next scan (probably in August) and for all the ones to come.  We PRAY that we are cancer-free FOREVER!  WE are also praying that Reese's immune system will recover on the early end of things.  It should take 6-9 months from March 27, 2012.  We are hopeful to go back for a visit with our family in Georgia soon (as in fall/Christmas time).  We haven't seen a lot of people in GA since August of 2011 and that is an eternity when you have growing babies.  I am also LONG overdue for Krispy Kremes and Zaxbys (sorry Tony Horton, I'll work out extra hard tonight for that comment).

Will try to update more frequently but thanks to all those who have prayed and loved us so diligently!

39 days

Well, today marks 39 days on the stem cell unit.  6 days of chemo, 2 days of rest, 1 day of transplant and then we started counting up.  Today is officially Day +30.  Over all, Reese has done remarkably well other than a bloodstream infection that cleared and a whole lot of vomiting and feeding intolerance.  Despite this, she has gained nearly 2 lbs (thanks to IV nutrition mostly) and is a pro sitter now.  She is starting to enjoy/tolerate tummy time and she is quite the socialite/chatty baby.

We are still working on feeds but things are going much much better now and we are GOING HOME TODAY!  (barring any huge struggles this morning).   Her bone marrow is still working hard to churn out cells so her platelets and hemoglobin still have to be watched for transfusion needs.  Her white blood cell count bounces up and down from day to day and some of those cells won't function properly for 6-9 months.  Nonetheless, we are hopefully on the upswing.  Reese has her next MRI on May 8th and we will anxiously await good results, in hopes that we are one step closer to being DONE with cancer.  The MRIs will continue every 3 months for some time until we are able to space them further.  Reese will spend her whole life riding into the donut (MRI machine) but if that's all she has to endure, we won't complain!

Thank you all for your prayers and support.  We are tired and oh so ready to live at home instead of the hospital as we have since August 27. There are still many more things to work through with Reese but she is so spirited that I think she's going to surprise us.  I'm planning on moving her pack n play mattress down when we get home because I saw her trying to sit up on her own yesterday!

In 3-4 hours, I should be able to do my "happy dance" as we roll out of here.  We are hopeful that we won't have to be readmitted for anything and this will be our last "leaving the hospital" day.  This makes our 8th hospital discharge in 8 months.  Ca-razy!

True Hope on Good Friday

This has been QUITE a week!  A week ago today, Reese started having fevers and had 4 days of positive blood cultures (bacteria in her bloodstream) before the antibiotics kicked in and started clearing the infection.  To clarify, it is not good for a person with a healthy immune system to have bacteria in their blood and it is CERTAINLY not good for a person with no white cells to have bacteria in their blood.  It was nerve-wracking for us to say the least.  I felt very up and down emotionally.  On Wednesday (2 days ago), she started to show hints of count recovery.  Today, she is starting to get into the range where her body can start the healing process and she is feeling better.  We still have a while to go but we are getting there.  Feeds will have to be gradually increased and she will have to be weaned off pain meds, etc.  

I follow a handful of blogs/caring bridge sites of other cancer patients, mostly anonymously.  When we started this journey, I was mostly looking for other kids who had a similar diagnosis to Reese because I was trying to get a feel for what to expect from that side of things.  Reese's tumor type is so incredibly rare that it has been hard to find someone with her exact story.  Not only is her tumor rare, but the age of her diagnosis (5 months) puts her in a VERY small category.  So I think I was also looking for some hope and success stories.  Long story short, I have had to forego reading some of these stories from time to time because the journey that these kids are on is NOT easy, even for the survivors.  It is a little easier now that I have seen Reese overcome some of these obstacles.  She has toughened and so have I.  Nonetheless, this week was heart-breaking because 3 of the children I follow passed away this week.  Since I have been reading these blogs, etc, I have not "watched" one of these kids die.  I have read a few blogs about kids who have already passed away, etc but I have not had the experience of loving a family, praying for them, and seeing the end come for their precious little one.  As you might imagine, it was not a good week for Reese to be feeling badly and for her to have a bloodstream infection.  

Because of this, I have been especially mindful of Easter and what TRUE HOPE is.  All 3 of the families that lost children this week express some degree of faith as vital for their perseverance through this difficult path.  One mom, in particular, I have identified with for the past few months.  I have eagerly awaited her posts so that I could know how to pray.  As she grieves and tries to survive the most impossibly awful thing in the world, she is real about her hurt but you can see God literally holding her up, carrying her.  He has done that for us with Reese.  I pray that I don't have to grieve as she does now.  I pray that Brian and I die in old age, after a full life with Charlotte, Reese and Philip (and hopefully their kids).  Even as we pray to come through the other side of this, it doesn't take much looking around to see that the world is broken. This will not be the only hardship we face.  We will witness injustice.  All of us are broken.  Disease is here to stay (this side of heaven). Crime/corruption, etc is everywhere.  It's easy to get really depressed and think, "God, where ARE you? Why don't you rescue us? What's your plan to save us from this awful mess? How could you allow my child to be sick?"  Good Friday/Easter answers these questions.  We ARE broken and we fall short of His glory, yet while we were still sinners, Christ died for us.  He is making all things new.  He is aware of our pains.  He has experienced them.  He is working all things to our good.  There will be glorious ending....like the best movie you've ever seen when everything comes together after you've watched the protagonist suffer/struggle throughout the movie.  There is so much we don't see or can't understand.  I trust Him and I know that He is leading us and carrying Reese.  I still worry about her and I'm still "type A" about her care.  But ultimately I have rest because God has a rescue plan which is greater/bigger than Reese's cancer and my brokenness. 

"You see, at just the right time, when we were still powerless, Christ died for the ungodly.  Very rarely will anyone die for a righteous man, though for a good man someone might possibly dare to die.  But God demonstrates his own love for us in this: While we were still sinners, Christ died for us. " Romans 5: 6-8

 Above: Palm Sunday at our church.  The kids come in with palm branches while we sing hosanna.  Makes me tear up every time.  Charlotte on the left.  Philip is on the other side so I didn't get a pic of him.

 Charlotte and Philip enjoying time with Gran (Pepaw here too) and Mommy outside.

Ready to insert Reese on the other side of Charlotte!  Picture to come in the fall when she can be outside again!