Where We are Now

Well, it has been a while since we have posted on Zach.  No news is good news, right?  Things have been going wonderful for Zach.  We have been doing EUAs (eye exam under anesthesia) every six weeks.  We have been doing tests upon tests to find out more about what type of retinoblastoma Zach has.  It is more information than our non-medical minds can understand, yet we are learning more and more with each visit to St. Jude.

I thought I would take some time to let everyone know in detail as much as I can understand where we are at with Zach right now.  If this does not make sense, it is probably because we do not understand it enough to explain it to everyone else, but we will try.

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In January, we found out that “round one” of Zach’s genetic tests came back negative.  This is great news.  When we say genetic tests, most people get confused thinking that the genetics show if Zach inherited retinoblastoma from us.  However, when we say genetic testing for Zach, we mean we are trying to figure out whether Zach has hereditary or nonhereditary retinoblastoma.  If Zach has nonhereditary RB, then he is not at risk for getting RB in his good eye, and the risk of him passing it on to his children one day is slim.  On the other hand, if Zach has the hereditary form of RB, he has a RB1 mutation in every cell of his body.  This makes him more likely to get retinoblastoma in his good eye before the age of 5 (the time in which his eye is growing/developing).  He also would be more susceptible to certain cancers, particularly in his teenage years.  Finally, he would have a 50% chance of passing on retinoblastoma to his children.

As you can see, finding out what type of retinoblastoma Zach has is important.  Hearing that his first round (there are 3 rounds) came back negative is GREAT news.  We found this information out the week before we went back to St. Jude for another EUA.  During his EUA, though, a small spot was found in his right eye.  Zach’s doctor, Dr. Wilson, was certain that this spot was not there before, but he also was not certain that the spot was retinoblastoma.  Acting on the side of caution, he went ahead and lasered the spot as the benefits outweighed the risk of leaving the spot alone.  This new development threw the negative test for round one of genetic testing up in the air.  Most hereditary forms of RB is found in round one.  Dr. Wilson ordered some more different types of genetic testing.

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Fast forward to our next visit in February, we received the results of his second round of genetic testing which were also negative.  Again, this is great news.  However, all of Zach’s doctors seem to believe he should be hereditary.  In addition to proceeding with round 3 of genetic testing, they also started another type of genetic testing to look for the RB1 mutation a different way.  When we met with Zach’s doctor after his EUA this time, no spots were found, and Zach’s spot from last time was still considered suspicious.  Dr. Wilson also told us that he suspects these new genetic tests to come back negative.  Our next step at our next visit (April) will most likely include yet more genetic testing in which they will send out new blood work to a specialist in Toronto.
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So where does that leave us right now?  Well, we are praising God that even though everything is pointing to Zach being hereditary retinoblastoma, they have not been able to find where that is the case.  At the same time, we also feel unsettled, anxious, nervous, and any other words you could fit there.  We are relieved (and not surprised) that these tests keep coming back negative, but we still seem to be waiting with our breath held for a new spot to show up.  Maybe it is because every medical person we speak to at St. Jude firmly believes that Zach is and should have the hereditary form of retinoblastoma.  After all, everything points to it from him being diagnosed under the age of 1 year old and the tumor being so large at such a young age.  We also trust Zach’s doctor, but even he has said at this point that Zach seems to be falling into a gray category they are not sure about yet.  He says that everything points to him being genetic (hereditary), but they have not found it yet.  It is at this point where he shrugs and throws his hands in the air.  (Have I mentioned how much we LOVE Zach’s doctors?!)  We truly believe that Dr. Wilson and Dr. Brennan (Zach’s oncologist) believe as we do.  We know that science can point one direction, but ultimately, it is God who has the say in these things. Science is wonderful, and we are thankful for it.  Our trust is not in science, though.  It is in our God.

Now, we are waiting until our visit in April where Zach will have another EUA, a MRI, genetic meetings, speech therapy, and occupational therapy.  It is going to be a busy visit, but we love seeing our St. Jude family!

We ask that you keep praying for Zach.  We are thankful for how God is using Zach to impact people.  We are thankful, most importantly, that God has the final say in what goes on with Zach and not anything or anyone else.

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Why I’m Thankful this Year

This year’s Thanksgiving is a bit different for me than any other year.  It is Zach’s first Thanksgiving, and we are more thankful than ever for this time to celebrate.  I feel like it would be so easy to focus on why I shouldn’t be thankful, so I wanted to share 15 reasons we are thanking God this year as a result of events that have occurred in the past two and a half months.

1. Thankful for health.  I know this is something we typically are thankful for but knowing that 9 weeks ago Zach had something in him that was hurting him makes me thankful that he is now a healthy baby boy.  As a mom, you try to make sure you keep your child healthy by feeding him right and making sure he is active.  It is hard to accept that you cannot keep them from something like cancer.  God had a plan to make Zach healthy.  Now, I do not take for granted  Zach’s, Andrew’s, and my health.  I am even more proactive about us checking our health now.

Puppies

2.  Thankful for a God who knows all and sees all.  To say we were surprised when we were told Zach probably had retinoblastoma on September 23 is an understatement.  When he was officially diagnosed two days later, we wondered how we could have known sooner.  One thing that I have found comfort in and have realized recently is that even when we are taken by surprise, our God is not.  He knew that Zach would have this sickness in him, and He knew what would happen after we found it.  He knows what will happen tomorrow and the day after that.  What a comfort it is to know that even when we are shaken to our core, our God is not.  He knows, He cares, and He is there to hold us during the surprising times.

3.  Thankful for the body of Christ.  While Zach was sick, I saw the Church gather together to support and pray for Zach.  The Church gathered around this country and world to lift Zach up in prayer.  God definitely heard Zach’s name a time or ten thousand that week.  It was such an encouragement and blessing to us.  Even when we did not know what to pray, we had fellow brothers and sisters in Christ doing it for us.

4. Thankful for St. Jude Children’s Research Hospital.  When we were told what Dr. Peterson saw in Zach’s eye, he said we could see the best doctor in Memphis or go to another hospital he suggested.  We had no idea when we said we wanted the best that that would send us to St. Jude, but thank God that it did!  St. Jude is an amazing place full of amazing people.  They take care of their patients with the best care I could ever imagine, yet they do not charge anyone a penny.  It does not stop there, though.  They are continually doing research to try and find a cure as well as a way to stop childhood cancer. I believe Zach is now a part of 4 different research studies but at no point did he have to do this.

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5. Thankful for people that give.  I am thankful that people give to St. Jude.  People give of their time and resources at St. Jude.  If it was not for people giving, we would not be able to go there and receive the care we do.  I am more thankful than ever for people who are willing to give.

6.  Thankful for other retinoblastoma families.  While I wish I could have met these families under different circumstances for them and us, I have met some amazing kids and parents.  It is a comfort to know there are other families who are going and have gone through the same thing.  I have met some new friends that have been there for me and helped me when I did not know what was going on with Zach.  They tell me when to worry and when not to.  It is such a blessing!

7. Thankful for medicine.  I know medicine can get a bad wrap, but I also know that I have seen medicine (properly used, of course) save my child’s life.  The medical advances they have made is making it possible for doctors to target more specifically treatments that will not harm people’s bodies as much.  Medicine has been able to ease Zach’s pain while he was healing.  I guess it seems silly to be thankful for this, but it is the little things in life that turn out to be big things sometimes.

Golf Carting

8.  Thankful for technology.  Technology made it possible for us to see all the support we had back home while we were away.  We received post after post and message after message of love, prayers, and encouragement.  It would make us smile and cry, but it was great to know how much we were loved during this trial.

9. Thankful for family.  This is kind of an obvious one, but Zach, Andrew, and I have been blessed with amazing family.  They drop everything when we need them.  They love us more than we could ever ask and take care of us.  I feel like God spoiled me when He gave me my family, and for this, I am so thankful!!

10. Thankful for God’s timing.  I have always known and believed that God’s timing is best.  I do not know that I have ever experienced how amazing his timing is, though, until Zach’s retinoblastoma was found.  Zach went to his 6 month check up at 5 months, which led us to discover a lazy eye.  The eye specialist we were sent to diagnosed him with something that he wanted another eye doctor to look at 2 months later.   When we went 2 months later, the “new” eye doctor discovered Zach’s tumor.  At almost 8 months old, Zach had his eye removed.  We new at the advanced stage his retinoblastoma was that he had a 50% chance of needing chemo.  He did not need chemo!  All of this to say that we had nearly 8 months of amazing ignorant bliss, but we found it in time to keep from spreading to where he would need chemotherapy.  God’s hand was in the timing of this the whole way through.  Praise His Holy name!!!

11.  Thankful for opportunities.  Zach’s diagnosis with retinoblastoma was bad, but the opportunities that have come from it have been a blessing.  I feel like I have a bigger platform than ever to spread Jesus’ name.  When people share their tough times with me now, I can confidently tell them that Jesus is more than enough to get them through.  I am thankful that even though Zach’s diagnosis was and still is scary, God is using him and us for his glory.  Sometimes that takes me out of my comfort zone, but it is in that time that God grows me.

Puppies

12.  YOLO.  I know, I know you only live once.  However, Zach’s retinoblastoma made me realize this in a totally new way.  Every minute counts.  You only live once, so are you spending that time doing the things that matter?  I have been busy studying for the CPA exam, cleaning, cooking, and doing other things moms do.  However, I had to reevaluate after Zach’s surgery if I was giving him all the time, attention, and love that I could.  I was afraid that maybe I was missing out by having my priorities off.  Don’t get me wrong, those things still have to be done.  However, I feel like I appreciate every moment I get now.  I am thankful that Zach is almost 10 months old now and is growing and learning every day.  I am thankful that You Only Live Once, so I can make sure that I am spending my time on things that matter.

13.  Thankful for my husband.  I am thankful for a husband that picks up the slack when I cannot.  While Zach was at St. Jude, he took care of listening to instructions and packing the diaper bag, so all I had to do was love and care for my baby boy.  He was stronger than I could have ever asked for.  He is an amazing daddy and even more amazing husband.

Play Time!

14.  Thankful for doctors.  I have always had a huge respect for people in the medical field, doctors in particular.  I feel like I now have even more respect for doctors.  We found Zach’s retinoblastoma because Zach’s pediatrician noticed a lazy eye.  It was only found because he took his time with Zach and truly cares about him.  The doctors at St. Jude treat Zach as his own and help us decide what the best steps to take for Zach is by thinking about what they would do if it was their kids.  I know that doctors see and deal with a lot.  I don’t know that I could do it, so I am thankful for the doctors who see the things they do but still care about their patients.  While I know they make good money, I also know that this job comes at cost.  They sacrifice time with their family, go through years of education, and deal with more than we could ever imagine.  Thank God for the men and women who knows the sacrifices but do it anyways!

15.  Thankful for a Savior.  Sometimes, I just need hope, don’t you?  My hope is in Jesus Christ my Savior.  I have heard people say that I just need Jesus to be real, and I will agree with that 100%.  I need Jesus to be real because without Him, I am hopeless.  Just because I need Jesus to be real, though, does not make it any less real.  During Zach’s first week at St. Jude, I needed hope.  I needed Jesus, and praise God, I had it.  I have never been more thankful that my God sent His Son to die on the cross for me and take my place, so that I can have the assurance of being with God in Heaven.  Yes, I needed to know that that week. I needed to know that regardless of whatever happened to Zach, I had a Savior I could cling to.  I needed to know that my Heavenly Father loved Zach and me and had not left me.  I needed to know that, and I have never been more sure that it is true.  I would have never been able to walk the road I walked, make the decisions I did, or deal with life after the way I have without the help of my Father.

A New Day and a New Eye

Thursday morning started earlier than it should have for a day with no appointments, but Zach was ready to go.  We had a fun day full of playing in the play room at the Memphis Grizzlies House and having fun with the animals at the zoo.  It was a nice break that we had from St. Jude to spend as a family.

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Friday was the day we had been waiting on for 7 weeks.  We knew it would be a long day, but it was going to be a day that was well worth it.

We began the prosthetic eye process by the occularist, Bob, matching Zach’s base color with his eye.  He then took a mold of Zach’s eye.  He carved and shaped it to match Zach’s right eye’s shape. Then, we took a break, so his eye could “cook.”  I know that sounds weird, but that’s exactly what Bob called it.  I guess we do not think anything of it anymore since this is our normal now.

Bob matching the base color of Zach's eye
Bob matching the base color of Zach’s eye

When we came back, Bob painted Zach’s new eye to match his eye.  It is truly a work of art. He sat there and looked at Zach’s right eye and painted.

Bob painting Zach's new eye
Bob painting Zach’s new eye

We took another break while he did other things to it, and when we came back, Zach got his new eye!

I feel like I am skipping over all the details of it, but on Zach’s part, it was just a few steps that took a long time.  The process consisted of a lot of details, but the end result is amazing.

Zach's first picture with his new eye
Zach’s first picture with his new eye

I did not know what I would feel when he got his new eye.  Honestly, I felt a little bit of frustration with it since his eye was still swollen.  The eye did not fit like I expected it to, but we left with reassurances that it would fit perfectly once his eye finished healing.  However, it was exciting to know that we were to this point.  We were to the point now where people can look at him and not know there was something different about him.  It was nice to know that now strangers can see his sweet smile and personality rather than him being different.  I felt like this was the first step in retinoblasotma not defining who Zach is, but retinoblastoma being a part of who he is.  The funny part about that is Zach has never let it be who he is, but it is the people who see him that would notice something about him was not right.

We are truly thankful for this gift, and it came in time for the holidays!

Future Model

EUA Day

November 13, 2013

Wednesday’s are pretty much the staple of our St. Jude trips.  It is typically the most stressful day of our visits unless we have an MRI scheduled (then that one takes the cake). On Wednesday, Zach had his EUA, examination under anesthesia, which is where Zach’s ophthalmologist, Dr. Wilson, looks at his right eye to check if it has any tumors in it.  This particular Wednesday morning started early as usual.  I feel like we were more calm for this EUA than we typically will be because we were expecting a clear report.  I don’t know why we were so sure it would be clear this time because we know something could appear in his right eye at anytime.  I also know that he is more likely to have it come in the right eye younger rather than a few years from now.  I think we were feeling confident because we did not want to think that Zach could already have something in his right eye after we had just removed his left eye.  It would be a hard pill to swallow.

Even though Andrew and I were ready to have this part of our visit behind us, Zach was not.  He woke up not happy because he could not have his bottle.  For this visit, Zach was the first EUA of the day, so we were thankful for that.  It would have been wonderful if Zach would have slept until 6 or 6:15, so we he wouldn’t have to wait so long.  However, he decided to greet the sun and woke up at 5:30.  Andrew and I took turns entertaining Zach so the other could get presentable before heading across to St. Jude for 6:30. The neat, but at the same time, not so neat thing about Wednesdays is that Dr. Wilson does several EUAs on retinoblastoma patients, so we have the privilege to meet other parents and amazing children.  The second child on this day was an 18 month old little boy who had bilateral retinoblastoma.  It is such a small world since this young family was from Baton Rouge. The mom was asking questions about Zach’s surgery since Dr. Wilson thought he would need to have one of his eyes removed, but she was not wanting to do it.  My heart broke for her because I completely understand that dread.  We knew, though, in our case we did not have any other options.  Zach’s tumor was too large and was no longer encapsulated.  I am thankful that we did not go through chemotherapy before having to do the surgery too, so I can only imagine it is so much harder to do the surgery after doing treatment first. Basically, cancer stinks!

Kisses

Andrew, Zach, and I were called back to pre-op.  Zach threw a fit as soon as we went into the room.  Thankfully, he is a ham, so anytime a nurse, anesthesiologist, nurse anesthetist, or doctor came in, he would smile and talk to them.  The anesthesiologist pretty much stayed in Zach’s room entertaining him.  When they had to go do something else, Zach would stay by the door and look out the window blinds that we opened.  He is very curious!  He made it through the eye drops wonderfully this time, so that was a true blessing!  Before we knew it, it was time to take him back to the surgery room.  I dressed in my scrubs and carried Zach back for anesthesia.  Zach’s new friends were there waiting on him.  He is such a champ and did very good going to sleep.  He cries just enough where they don’t worry about him not being normal but not so much where it is completely heartbreaking.  I walked back to the waiting room to meet up with Andrew and to wait with the other families.  It was a total different feeling this time waiting because we felt like we knew what to expect.  Even though we had only does this once, we felt like pros.  We also knew this time, regardless of the results, we knew we could handle it.

It wasn’t long before the phone rang to tell us Zach was in recovery.  By the time we made it to recovery, Zach was awake and screaming for his bottle.  I love my baby boy!  He didn’t want Pedialyte, he wanted a bottle!  He drank 8 ounces, which is a lot for him, and he still wanted more.  This time, he would take the Pedialyte the nurses gave him.  Dr. Wilson (ophthalmologist)  and Dr. Brennan (oncology) met us in recovery this time since Zach was the first patient.  Dr. Wilson lines patients up and does two right after each other and usually meets with the families in a conference room in the waiting room.  Since Zach kicked the day off, it was a little different.  He gave us the great news that everything looks great!  He took the sutures out of his left eye while Zach was under anesthesia, so we just had to wait for the swelling to go down from that.  Then, he would be completely healed from surgery.  After that, we were able to leave recovery and grab some breakfast.

Wagon Ride

Our next appointment was occupational therapy.  We were early, so Zach and I headed to D Clinic to play while Andrew waited in case they called for us.  While Zach was playing, another little girl came to play with him.  She’s a retinoblastoma survivor as well, so I was able to talk to her mom and find out their story.  I kind of look at Wednesdays as retinoblastoma support group day.  We are all there for EUAs praying for our children while simultaneously praying for these other families’ and their babies.  Even though our experiences and stories are different, we are all a part of this small retinoblastoma world, and it is a comfort to know that someone else knows exactly what it feels like.

Eventually, they called Zach for his appointment.  This appointment was just to get a baseline for where Zach was developmentally.  All patients meet with them.  Zach did wonderful, and he is right on par with where he needs to be and above!  He really enjoyed this appointment.  They gave him puffs and let him play with all kinds of cool toys.  Oh, it also did not hurt that they gave him attention.

What ya got in there?
What ya got in there?

Later on that afternoon, Zach met with his speech therapist.  He loved them too.  After all, he is a ham! He was nosy, curious, and into everything!  His hearing is exceptional.  Again, we were told that he is an “A” and above in all areas.  This was such an encouragement to us.  We felt like he was where he needed to be, but it was nice to hear it from professionals.

Our final appointment of the day was a genetics meeting.  We did not find anything new out here, but it did remind me that we are still waiting on the results of Zach’s genetic tests.  We went over the percentages of retinoblastoma, the hereditary and sporadic chances, and so much more than I could ever explain here.  What Andrew and I concluded is that we do not care what the percentages are, we are just waiting to find out the results.  We could go over the chances over and over, but the odds do not tell us whether Zach will have the hereditary form of retinoblastoma.  We do know that Zach is likely to have the hereditary form since he had this cancer under the age of 1.  The hereditary form just means Zach would be more likely to get it in his right eye, and his risks are higher for other cancers.  However, we know that God is in control no matter what the numbers are and no matter what the outcome is.

After our full day, Zach was pooped.  We grabbed dinner and began the exhausting task of getting Zach to sleep in a strange place.  I do not know why we bother putting him in his crib there.  He does not stay there for more than a few hours.  Maybe it is us trying to prove we are more stubborn than him, but he proves us wrong constantly on that front.  So instead of staying up and playing on my phone all night, Zach and I cuddled up at 7:30 and went to bed.  After all, we would be up before the sun anyways.

Back at St. Jude

Last Monday afternoon, we headed back to Memphis, so Zach could have his EUA done and also to get his prosthesis.  We made it to St. Jude around 9 pm, and Zach was not happy to be back in our hotel room.  It’s amazing how he remembers.  We eventually got him to sleep and settled down.

On Tuesday, we did not have any appointments until after lunch time, so we ran some errands around Memphis in the morning and let Zach play in D Clinic.  We also had the opportunity to go the HomeGoods party where Zach got to pick out a toy, make a Christmas ornament, get some yummy snacks, and Mommy even got a giftcard!

Zach at the HomeGoods Party
Zach at the HomeGoods Party

After we had some yummy lunch in Kay Kafe, we had an appointment with our assigned social worker (every family at St. Jude gets one).  I will try to be as nice as I can about our visit.  Suffice it to say, our social worker met with us basically to tell us over and over not to ask what we can get for free or qualify for because Zach does not qualify for anything since he does not have cancer anymore.  She even had the nerve to tell us, “I guess it is a good thing you don’t qualify.”  We were extremely insulted, and I kept my composure by playing with Zach.  We have never once asked for any kind of handout.  As a matter of fact, it is hard for us to accept all that St. Jude is doing for us and not pay for it. We are more grateful than words could ever express and for her to treat us like we would expect anything else is insulting.

When we were finally able to escape that meeting, we had a few other stops we had to make.  Our last and most anticipated appointment of the day, was in C Clinic.  Here, we met with the anesthesiologist, and he checked Zach out to make sure he was healthy and good to go for his EUA on Wednesday.  Zach loved playing with him!  After he left, Zach’s nurse practitioner came to check on Zach.  Zach absolutely loves Tracy, and I do too!  She has been wonderful the past few weeks after surgery.  Zach was happy to see her and crawled up in her lap.  He gave her the Thank You card he got for her for all of her help, after he ate it first, of course!

That's one handsome dude looking at me
That’s one handsome dude looking at me

When we were done there and our questions had been answered, we headed over to the ABC wall to meet the NBA Toronto Raptors team.  They did an awesome job dealing with Zach!  It was really awesome to see!

Toronto Raptors

We were thankful for an easy, fun day at St. Jude as we prepared for Wednesday’s EUA. We were expecting a good report on Wednesday, but there is and will always be nerves any time he has an EUA or MRI.  Thankfully, we have a place to find rest from our worries, and that is rest comes through Jesus.  I am having to continually remind myself of Philippians 4:6 and the promise that comes in verse 7.

“Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God,which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7

Dealing with Ignorance

One thing I have learned since having a baby is that people love to stop, look, talk, and even touch a baby.  It is something I have become use to.  It was a real “burden.”  I mean, what mother doesn’t love hearing how adorable, sweet, and cute their baby is?

I knew that once Zach had his surgery that our going out in public would be different. Sure, he was still the most adorable baby ever (I admit, I’m biased), but I knew now that instead of hearing how cute he was, I would be answering questions.  Answering people’s questions does not bother me.  Answering people’s questions that are flat out rude or ignorant has become frustrating.

Since Zach has had his surgery, I have come to realize that there are several different types of people you can run into.  There are the ones who act like nothing is different about him, ones who speak what is on their mind, and ones who point and whisper like you can’t see them staring.  It has become humorous to me, but it can also be frustrating.  I tend to get stuck in conversations when I just want to make a “quick” trip to the grocery store.  At the same time, though, I am so proud to tell people how strong my little boy is and how much he has overcome in a few short weeks.  It took me a few days, though, before I gathered up my Southern “Bless Your Heart” mentality to deal with those who are ignorant on proper conversation with strangers.

On our way home from Memphis, we stopped to grab lunch at my favorite place, Panera. We were almost done with our meal when I looked to see who Zach was looking at now.  He was smiling at a woman, her teenage son, and her teenage daughter (or so I assume).  Zach loves to look at people and wait for them to look back at him so he can smile.  He is a major ham!  These people, though, never really looked at Zach because they were to busy whispering to each other and glancing back and forth at him.  It was extremely frustrating to me.  I would have loved to tell them how amazing Zach was and what he had been through for the past week.  Instead, they just whispered and speculated what was wrong with Zach like we wouldn’t even notice.

Wagon

Sunday we stayed home because Zach was feeling pretty bad.  It was the third day after surgery, and that is typically the worst day.  Come Monday, though, he was feeling so much better that I decided to run some errands I needed to do.  I went to get my oil changed, and I learned quickly that men will ask what is wrong quicker than women will.  The man that checked my car in asked what happened.  I proudly told a brief summary of Zach’s story. He made the comment that he was almost afraid to ask what happened because you never know anymore.  I reassured him that I did not abuse my child and just laughed it off as the way men think.  I passed probably four more men who talked to Zach and each one of them wanted to know what happened.  I found it amusing that they would take so much interest in Zach, but of course, men would want to know the story behind Zach’s black eye.

Since then, I have encountered people who would just make the comment that “he fell.” Then, there is also the people who like to “ask” Zach what his mama did to him.  Most times, I just grin and keep on going.  It is much easier for people to speculate in their mind what happened to Zach than for me to tell them the truth.

Now that Zach has managed to open his eyelid despite the sutures, it isn’t so easy to just let people assume he fell.  On the other hand, it is a relief that people also don’t accuse me of hurting him (not that they were ever really serious…I think).  I already feel guilt over Zach’s situation even though I shouldn’t, and the accusations didn’t help that.  Now, though, I get even more ignorant comments from people.  Some people are sweet and still say how handsome he is or act like nothing is different.  Others simply ask what happened. My personal “favorite” comment I got was in the grocery store where a man exclaimed rather loudly, “Will his eye ever be normal?”  I guess it is a valid question, but since I did not know him and vice versa, it isn’t the best conversation starter.  I just smiled and informed him he would be getting a prosthetic eye in November.  I wish I could count the number of times I have had blunt questions like that from people who have no clue who I am or who Zach is.

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This past month has taught me due to some people’s tactless comments that we, as people, always feel like we need to say something.  Why is that?  I know I am guilty of it. What I have learned and am trying to apply in my own life is that sometimes less IS more.  If a friend is facing a tough situation, he or she does not need me to give them some sort of earth shattering piece of advice or wisdom.  Rather, that individual probably just needs to know that I am there, and I am praying.

Even though I do not normally say things to random people and try to be tactful if I do, I have learned that I want to be purposeful in what I say to people.  I am not just talking about strangers, but just anyone I come in contact with. Words leave an impression on people, and while I am far from perfect and will mess up, I want to think before I speak.  I want to stop and think about if what I am saying is good and profitable.

I never realized that I would learn so much AFTER Zach’s surgery, but God is using Zach to teach me daily.  It is a beautiful thing to see the innocence of a child.  While I am cringing at the words people choose, he is smiling and waving at them.  I may not can change what people choose to say, but I can change the way I react and what I say.  I knew having a child would change my life, but I never knew he would teach me so much in such a short amount of time.  Just another reason I love him so very much.

What Today and Tomorrow Hold

Zach woke up Saturday morning happy and ready to play.  I think it encouraged all of us that Zach was going to be okay.  He was back to himself for a little while, and that was what we needed to see.

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We went to assessment and saw Dr. Tse, Dr. Wilson’s fellow, and he gave us the go ahead to head home!  I have never wanted to be home more than this.  At the same time, though, it was weird.  I kind of equate it to the feeling of going to youth camp.  You are separated from the outside world and are pretty much in a bubble for a week.  Leaving camp, you have to face the real world.  While we had faced reality all week, it was still a weird feeling to be leaving.  Things that use to seem so important weren’t anymore.  Things changed for us that week.  I changed that week.

Zach slept a good way of the way home and was so happy to get home.  Andrew and I both felt like we were taking a newborn home for the first time all over again.  That night it sure seemed like it since his days and nights were all messed up.  We were so tired, but all we could do was laugh at 3:30 am when Zach wanted to play with us.

Sunday was by far his roughest day of his recovery.  He would not take a bottle, and his eye was swollen three times the size it was on Saturday.  He was miserable, and I was worried.

Monday morning, though, began a new day and his eye was looking so much better!  It was a comfort to feel like he was getting back to himself.  That does not mean these past couple of weeks have been easy.  Zach got the stomach virus and shared it with us.  He got to visit the local children’s ER.  Then, he was dealing with stomach issues for 3 solid weeks. Oh, and while we were visiting my family, he and I both got another touch of the stomach bug.  Yeay…

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BUT he is healing wonderfully.  I even sent a picture of Zach’s eye to the nurse practitioner this morning (I was worried it was swollen more today), and she and Dr. Wilson said it looks good!  Praise the Lord!

So… I thought I would take some time to answer some questions that I have gotten from several people about what the future holds for Zach.  Obviously, we don’t have all the answers, only God does, but we do know that because Zach had retinoblastoma so young (he was probably born with it), that he is more likely to get it in his right eye or on his brain. We will be going to St. Jude every 6 weeks for them to look at his right eye, and he will do a MRI twice a year.  We will spread these visits out at the age of 2 or 3 if his scans stay clear, and we will only have to go every 10 weeks instead.  Zach will be a patient at St. Jude until he is 18.  It is so comforting to know that they will be watching him so closely.  

When we go back in November, Zach will have assessment one day, will have his EUA (examination under anesthesia), and will get his prosthetic eye.  They will actually paint it to look like his right eye!  It is really amazing! 

Right now, we are just trying to enjoy every day and make the most of it.  I do believe that I will gray prematurely and have plenty of wrinkles now.  The boy is determined to scare me to death!  I now worry over EVERYTHING as if I didn’t already do a good job at that being a first time mom.  I am confident that it will get better with time, especially as he gets older and can tell me if something is bothering him rather than me playing the guessing game (and then calling my mom when that fails).  :)

I will continue to update the blog as I have info to pass along.  I appreciate each and every one of you for reading about our journey!  It means so much to us that ya’ll care and pray for Zach!  Please continue to keep him in your prayers as he continues on this journey.  We are praying that the Great Physician will keep Zachary cancer free now.  I know the statistics, but I also know my God is able!

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