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!