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!