Day One Hundred Sixty-two

“Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us.” Ephesians 3:20

Today is a day of thanks!  Thank you, God, for guiding, comforting, strengthening us to this point in our journey.  Thank you for keeping Ryan healthy during his chemotherapy treatment.  Thank you for the love of family, friends, and volunteers. 

Ryan's last chemo treatment was today, but the roller-coaster of emotions continues.  I am so grateful that we are at this point, and I pray that the scans and tests are positive over the next several weeks.  Ryan has been through so much, and I am ready for the medical stuff to be over for him.  I know that he is too. 

I still remember when I was in the waiting room during his second round of surgeries.  A little girl came out and the family was happy that she had completed her treatment.  The gentleman said that they only had to go to the emergency room three times due to fever. 

When we started the treatment, the doctor said that there most likely would be emergency room visits for Ryan.  We didn't have any.  Thank you, God. 

The doctor also was certain that he would need two or three transfusions.  He didn't have any.  Thank you, God.

The treatments were safe.  Thank you, God. 

There are a lot of reasons to be thankful, and I truly am....and have been every single day, and every single wonderful moment that we have shared since January 22nd!

We were excited this morning and were singing little songs (the kids really like the songs that I make up..Emma goes nuts, the kids start singing, Mirjan just rolls her eyes), and then we realized that we were going to be late to the appointment.  We were.  The waiting room was packed! 

Everyone was real nice, as they always are, to Ryan today.  He played a little bit before the treatment started, and then the anticipatory vomiting began.  We talked to the doctor about that, and he told us that when he was in Maryland, a 30-something guy would come in once a year for a checkup.  He was treated for cancer when he was a child, and every time he came into the clinic on his annual visit, he would vomit.  He said to really talk to Ryan about when he comes in the next several times, that he should know that he won't be receiving a chemo treatment, but only blood tests.  I don't think that will matter to Ryan, because it will be the same environment, the same process, the same people, etc.  At least we know that he won't get sick afterward.   We'll see how it goes next week. 

Oh, before the doctor came in, the nurse practitioner/intern who is really good with Ryan was checking him out and talking to him.  She kept joking with him, so he warmed up to her.  When she left, she said, "Hasta luego," and Ryan responded with, "hasta la caca."  She just started laughing on her way out.  He is really good with his manners, so that caught us off guard too.

After his blood test today, we had to wait for the chemo drugs for about 1.5 hours.  There were several activities in the clinic, so the the kids played bingo for prizes, ate snow cones, created some art masterpieces, and Ryan put together a lego firetruck.  Emma made her great escape and almost made it to the other side of the clinic before she was rounded up.  The drugs finally arrived from another hospital (which I really didn't understand why the children's hospital didn't have it), and the nurse was super great about administering the chemo while Ryan was working on some art.  She really has been amazing with Ryan.

Everyone raced to push the elevator button!  Emma won!

We talked with the doctor, and we will be going back for the next few weeks for blood tests.  In about three weeks, Ryan will have the scans, and I pray that they are good.  After that, he will have blood tests every month, and scans every three months.  So, we'll still be visiting the clinic, but just not as often.  The doctor said that he would recommend keeping the port in until after the second set of scans.  So, Ryan will have surgery to take out the port at that time. 

I asked Ryan where he wanted to go to eat for a late lunch today.  He said he wanted to go where they served chocolate cake!  So, we headed to Chili's.  Ryan ate like I haven't seen him eat in six months.  Chips, Mirjan's ribs, all of his oranges, and then a corn dog.  It was good to see him like that.  He said the ribs weren't just good; they were great!  Mirjan graciously let him eat just about all of her ribs.  When the cake came out, Ryan said, "I don't think I want any today."  That was music to Davianna's ears, and the cake was gone in two minutes. 

Then the rain came.  It was pouring buckets, so I took the kids out, one by one, under the umbrella so they would stay dry.  When all were dry in the car, I got in and was completely soaked.  We got home around mid-afternoon and lounged around.  I had wanted to go do something else today with the kids, but it was probably better just to head home for a while.  Mirjan and the kids went over to Will and Marielk's house for dinner, and I stayed and played with Ryan's birthday toys. 

The kids are excited to see Nana tomorrow!  I hope that she comes rested, because they are planning to wear her out!

The blog will continue...at least until we get through the first set of scans in a month or so.  We'll see then.   I have enjoyed it, and hope others have as well.

Father, thank you for blessing with this day!  I am so grateful that we have reached this point with your guidance.  When we started, it seemed like the days were going in slow-motion, but you sped things up for us in many ways.  I thank you for the many wonderful moments, people, and events during the last six months.  You are amazing, and I am grateful.  I pray for good scan results and that your hands of protection continue to hold Ryan.  In Jesus' name I pray.  Amen. 

Day One Hundred Forty-one

"Do not neglect your gift."  1 Timothy 4:14

Friday come and Friday go.  Another chemo.   Ryan took it like a champ and did a great job today!  He did get sick, but it was at the very end of the treatment this time when his port was flushed.  He really was good throughout.  Mirjan took Davianna today, and I was stuck at work.  I think that is the last one that I will have to miss, barring any more work surprises.  I told Ryan that I wouldn't be there today, and he said he was cool with that, but then he asked why I didn't go when I got home.  That made me feel like a champ.   Thank you, Mirjan, for being so wonderful each and every day!

Pops and Mama Elise took Ryan out and about when he got home.  They spent the morning with Emma, so they switched kids and kept going.   When I got home, something looked off.  The grass actually looked shorter, and I had planned to spend the evening mowing.  Pops must have drank a 5 hour energy drink, because he went out and mowed the front and the back.  That was an awesome surprise.  Thanks, Pops!

We had his famous meatloaf and Mama Elise made a cake, so we ate well tonight.  Ryan got sick again this evening, but he was over it pretty fast.  One of Davianna's friends spent the night and there was way too much girl talk and giggling, so the guys took off.  We went to Best Buy and looked at stuff and then headed over to the pet store and checked out all of the critters.  In the car, we were listening to k-love, and Ryan was singing all of the songs.   I love going out with Ryan and doing stuff.  He puts on his "cool act" - he talks cool, walks cool, and just acts cool.  I can't get enough of that. 

When we got home the girls got ready for bed, but Ryan stayed up and watched a movie with Pops, Mirjan, and I.  He said several times, "I think it's past my bed time."  I would ask him if he is ready for bed, and he would immediately say, "No."  After the movie was over he asked if we were going watch another one. He enjoyed sitting next to his daddy and hanging out with the big people.

Father, thank you for being with Ryan today and thank you for a safe treatment. Sometimes the treatment schedule seems like a routine, but I know you are there each time, and I am grateful.  You are amazing and have made this journey manageable with your guidance and comfort.  I ask that you continue to strengthen Ryan and heal his little body.  In Jesus' name I pray.  Amen.

Day One Hundred Twenty

"Ask in faith, never doubting."  James 1:6

1,2 buckle my shoe.   3,4 vomit on the floor.   Ryan received a couple of chemo drugs today, and he didn't vomit when the drugs went in, he didn't vomit when the saline was pushed, he vomited the moment that his port was accessed.  There goes the theory about it being pushed too fast (that could have been part of it at that time).  Anyway, another nurse spent time with him and talked about a different approach for next time that will hopefully alleviate some of Ryan's anxieties.  I'm glad that they don't weigh him after his treatment.....he would weigh about 2 pounds less each time.   Poor boy.  I feel bad that his body reacts that way, and he knows it's going to happen.  I told him he is the toughest boy that I know, and that I'm proud of him.

I was stuck at work today and couldn't get to the doctor's visit...first one that I have missed.  So, Mirjan was in charge.  I haven't received the full report from Ryan and Emma, but I think she did a good job today.  She will get a superstar sticker since she got there early and had to help with the after affects of the sickness. She also learned to step aside when Ryan gets his "V" face.

I was at work really late last night, so I didn't get a hold of Mirjan's pictures from Ryan's graduation.  It was interesting seeing the picture video at the end.  Ryan looked like a little boy at the beginning of the year, and he looks a couple of years older now.  The best part was when he saw me after he walked across the stage and just came running to give me a hug.  Besides his physical appearance, this journey is maturing him beyond his years.

They introduced Ryan as the student with the best manners.  "Ryan has the best manners.  He always says yes, ma'am, no ma'am, and listens well."    That's the Texan in him!

"Yeah, I'm just going to stand here and pose.  Take my picture, ladies."

His teacher is such a blessing!

"Graduation is so much fun!......What is graduation?"

Ryan was really sweet with me today.  We had fun at bed time.  He was laughing so hard, it made me laugh.  And then Davianna came in and started laughing too.  Great!

Father, thank you for blessing Ryan with a safe treatment today.  Thank you for keeping him healthy enough to graduate with his friends.  I ask that you continue to comfort him, strengthen his immune system, remove his anxieties about the treatments, and heal his little body.  In Jesus' name I pray.  Amen.

Day One Hundred Thirteen

"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened."  Mathew 7:7-8

It was a vomitless (is that a word?) day for Ryan.  Yeah!  We talked to the doctor about him getting sick about 20 seconds after the saline push, and she said that the nurse is pushing it too fast (hmmm, did someone say that the other day??).  The last two treatments, Ryan's color would change immediately, and then he would get sick.  Today, a different nurse did it slow, and he didn't have a problem.  That's a great thing!   

After the treatment, Ryan played a little bit in the play area, and we saw Samia!  It's been several weeks, so it was good to see her again.  Ryan missed John, so hopefully they will be able to hang out next week.  We still don't know when the treatment will be because they said that they were booked on Friday. We will find out next week.

When I got home from work, Ryan was in a good mood.  Actually, he was in a good mood all day.  Even at the doctor's office (minus the 3 minutes that his port was accessed).  Davianna had fun at her field day, and she kept talking about tug-a-war.  She thought that was really cool.

After we ate, Will and MArielk came over.  The kids love it when they come over!  Mirjan and MArielk were talking about baby showers for about 2 hours.  MArielk also mentioned something about a "push present."  It's a gift that the husband is supposed to buy his wife for pushing the baby out.  I told Will he should buy her a lawnmower.  Will thought that was a great idea!   Mirjan made a cake for MArielk's birthday...here is the birthday girl:

It was a good day, and Victor Alejandro is awesome!!  :)

Father, thank you for blessing Ryan with a good day, and a safe, sick-free treatment! I thank you for being with us each and every day and taking our anxieties away as we are walking this journey.  Thank you for doing great things for Alicia, and please continue to be with that little girl and her family.  Thank you for Will and MArielk and please be with them and bless their family.  Father, I thank you for today and your wonderful blessings.  I ask that you continue to heal my little boy.  In Jesus' name I pray. Amen.

Day One Hundred Six

"Today is the National Day of Prayer, and most people think it's good to pray, but what is prayer anyway?  Chanting?  Reciting something from an old hymnal?  Could be.  But really simply, it's talking to God from your heart.  It could be on your knees by your bed or simply in your car on the way to work.  Prayer is the most transformative action you can take in your life.  Things happen when you pray."

I was very late to Ryan's treatment...about an hour....due to some surprises at work.  When I got there, Ryan had just finished some play therapy using the dolls, needles, syringes, etc.  So, I was just in time for his treatment.  Within 1 minute of getting the saline push, his breakfast and lunch were all over the table and floor....again!  I'm going to have to do some research on this as it doesn't make sense.  13 treatments without an issue and the last two resulted in immediate vomit volcanoes.  I talked to the nurse afterward, and she will talk to the doctor.  I wonder if the push is happening too fast.

Oh, Mirjan was holding him like a loving mother, and as a result, she was covered in some vomit too.  The rest of the time that we were at the doctor's office, people would sniff when Mirjan walked by and then gag a little bit.  :) 

Ryan's blood work was good, and the doctor said that he could go to the pool if he wanted.  So, I went back to work and they met some friends at the pool.  We all got home about the same time and then it was lawn mowing time, bath time, pizza time, and fun time. 

Father, thank you for a safe treatment today.  Thank you for the high counts, so that Ryan can continue to go out and have fun.  Thank you for the sweet kind comments and phone calls from Ryan today.  I ask that you continue to strengthen him and heal his little body.  In Jesus' name I pray.  Amen.

Day Ninety-nine

Focus on giants—you stumble.
Focus on God—your giants tumble.
-Max Lucado

Well, this was an interesting treatment.  I showed up and waited for Mrs. ELT, and then carried Ryan into the doctor's office because he was sound asleep.  He finally woke up as they were calling his name.  His weight was about the same (down .2 lbs), and he didn't grow or shrink. :) 

The doctor did his examination and then the excitement started. Ryan did not want the needle at all.  It seems to get more difficult every week, and after today it became more apparent why.  I don't think it's the needle,  I think it's the sensation and immediate impact of fluids entering his body.  Within 30 seconds of the anti-nausea medicine entering his body, his face was flush and about 1 minute later it was a VOMIT VOLCANO!!  (That makes a lot of sense, huh?  The medicine that is supposed to keep him from getting sick immediately made him sick.)  It looked like he had a very big and healthy lunch, and it was everywhere.  Mirjan was holding him, one nurse continued to give him the chemo and another helped clean up.  I buckled Emma into the car seat just in case she was hungry (eww, gross, but she is 15 months old...and it was pepperoni pizza) and I went to get a glass of water for Ryan.  Everything was cleaned up, the the chemo was finished quickly, and we packed up and left.  On the way out, Mirjan got him some Powerade, and he was back to his normal self.  On the way to the garage, we were playing around with each other and he was laughing out loud.  He seemed just fine.

On a bright note, the CBC results were really good.  The doctor said we might barely stay above the count levels and not need a tansfusion during the rest of the treatment course or barely go below and have to have a transfusion.  I'm praying that Ryan misses the transfusion process.

I worked late tonight, but Davianna called me and asked, "Are you going to sleep on your pillow tonight."  She was indirectly asking if she could sleep on my pillow, which was fine by me.   I asked her about the tooth fairy, and she said she received $3.50 (uh, she got that all I had in my pocket last night :)  ).    The kids were in bed when I got home, so I kissed them and then took a break on the couch.    Again, a crazy week or two, which should get better.  I'll look forward to spending the weekend with the family. 

Father, thank you for blessing Ryan with a safe treatment today.  I ask that you minimize the side affects and let this be a good weekend for him.  I ask that you strengthen his body and keep his counts high through the remainder of the treatment.  Please continue to heal my little boy.   In Jesus' name I pray.  Amen.

Day Seventy-eight

"that is, that you and I may be mutually encouraged by each other's faith." Romans 1:12

Ryan is in the hospital overnight, and the treatment is going as expected (at least went Davianna and I left @ 7:30).  He was in good spirits, and I pray that he has a good night.  I know that it will be rough on both Mirjan and him, but I hope that they can get some rest, and that Ryan doesn't get too sick.  Last time, I thought he was on pace for a good night, but it turned out to be really rough.  He didn't get the CT scan today, so that might happen tomorrow.  We also found out that the doctor wants to do an MRI, so that will be another outpatient visit in the next couple of weeks. We're praying that the scans return positive results.

Mirjan has been a trooper today.  She arrived at the hospital on ELT time, and she will stay there overnight.  I know that she was getting tired, so I expect her to take a nap tomorrow, which will be well deserved.  Oh, this is just for my memory....Mirjan and elevators...hmmmm.

I left work and picked up Davianna from school about 1:00pm, and we headed up to the hospital.  Pops and Elise were already there with Emma, so it was a full house.  We were in and out of the toy room, went for a walk in the courtyard, and watched tv in the room.  Mirjan made friends with another family several weeks ago.  They have a daughter that was diagnosed with cancer about the same time Ryan was, and they also have a two year old that was then diagnosed with lukemia.  The girl's cancer is all over, and there is not much that they can do for her here, so she will be going to Houston.  Anyway, Mirjan took all of her nail painting supplies and painted her fingernails today.  It was an amazing job, and the girl was really happy.  Lord, please bless their family and be with them.

Pops and Elise took Emma home around 4, put her down for nap, then bath, dinner, etc.   Davianna and I went downstairs where a group of UT business school students were helping children with origami.  Davianna picked the most difficult flower, and they eventually figured out how to make her one.  It was really nice.  Then they made her a crane, and then Ryan and Mirjan joined us.  They made Ryan a super cool dragon, an eagle, and a hawk.  They were really nice and showed genuine interest in the kids.  God's love displayed.

The physical therapist came by today and performed several tests on Ryan.  She said that the chemo affects the joints, so she wanted to see if Ryan would need further evaluations and/or physical therapy.  After testing his strength in his wrists, ankles, seeing how fast he could sit down and get up, watching him write, and then hop and jump, she said that she wouldn't be seeing us again.  Thank you, Lord!

An unusual thing happened today.  Ryan was on the couch in the hospital room playing an ipod game, and I guess as he was getting comfortable, his movements caused the IV connection to break.  I saw it and went to get the nurse.  When we came back in, not only did the connection come apart, but blood was dripping out on the floor. The nurse immediately clamped the IV, cleaned it, put in a new connection, and Ryan was back in business.  We have been doing this for several months and this was the first time that has happened.  The last thing you want to see when your son is hooked up to two IV machines is blood on the floor around him.  Now I'm paranoid about making sure there is always enough slack in the line when he is moving around.

Mirjan and Davianna went across the street for dinner, while Ryan and I played at the toy room and then ordered dinner for Ryan (which he didn't eat).  When they returned, Davianna, Ryan, and I went to movie night.  There was an organization that had a gift basket and a balloon for all of the kids.  We watched about 45 minutes of "Cloudy with a chance of meatballs," and then went back to the room.    Soon after we returned, Davianna and I headed home.  She fell asleep in the car, and I carried her up to the room.  We all played with Emma for a while, and then I put her to sleep.  She was a lot of fun this evening. 

Here are some more pictures from Pops' camera (Mirjan has plenty more, so I'll have to get those tomorrow):

Emma found a friend!

Father, please be with Mirjan and Ryan tonight and provide them strength and comfort.  Ryan needs you on these nights, so let him feel your presence and guide him through the treatment. I ask that you minimize the side affects and let Ryan get some needed rest.  Be with the nurses and doctors as they care for him throughout the night.  I ask that the treatment be safe and effective.  Father, we have given you our anxieties, and have faith that the scans will show no signs of cancer as your healing continues on this journey.  I ask that you also be with the family with two children in the hospital and the outlook is not good.  Bless them, comfort them, and guide them.  I thank you for Mirjan's heart and caring for others as she took the time to show your love today to others, even as her own son was undergoing treatment.  Father, I ask that you continue to heal my little boy.  In Jesus' name I pray.  Amen.

Day Seventy-one

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose."  Romans 8:28

Chemo treatment #9 today.  Ryan didn't like the needle, but once that was in, it was smooth sailing until it was time to remove it.  His counts were low again this week, and the doctor is pretty sure that a transfusion will be required in the next 2-3 weeks.  Ryan was tired in the evening and didn't want to eat.  So, Mirjan put him to bed early to get some well deserved rest.

Davianna went to play at one of her friends house, while Mirjan, Emma, and Ryan headed to the doctor's office.  I left work and got there right at the appointment time.  Where was Mirjan??  Oh, yeah, ELT is in effect.  They got there about 10 minutes later, and we went in.  Ryan gained another 1/3 pound, so he is almost  back to where he was four weeks ago.  Three weeks in a row he has gained some weight.  Thank you, Lord!!

At the doctor's office, there were some ex-UT football players that were leaving when we were arriving.  Then a group of people came in and talked with the kids.  One was Latoya Luckett (in original Destiny's Child), who is now singing solo.  She was very nice and talked to Ryan for quite a while.  Ryan was being very shy, and kept putting his autograph card over his face. 

Here's a picture of her pulled from the net.

There was also a nice lady that does make-up for the stars, and she was making up the kids.  Mirjan stood in line and was very excited to get some make-up.  I don't think she pushed anyone littler than her out of the way, but I'm not quite sure because of all the chaos. :)   The lady asked what she used to get her skin so smooth, and Mirjan told her that she doesn't use anything.  I believe that she secretly rubs plantains on her skin for the smooth, healthy look.

There was also a comedian, a director, a make-up/clothing guy, and others.  The make-up/clothing guy talked to Ryan for a while and was very nice.  He said he worked on the set of Zach and Cody with Brandi.  These people were so nice to share their time, and really showed that they cared.  God's love displayed.

While we were there, Ryan hung out with John for a while.  That is one of things that he looks forward to each week!  Samia showed Mirjan and I the video that they did for their website.  Here is the Superhero Kids website.  The video is at the bottom right and Mirjan was interviewed (I brought back her "Hollywood" nickname).  This video will go viral and she will soon be a superstar!  :)  

When I got home from work, it was time for dinner and church.  But Ryan was feeling well, so I cooked marvelous hot dogs on the grill and Mirjan took care of Ryan.  So, we missed the service tonight.  I think she just wanted to hold her little boy for a while. 

Father, thank you for blessing us with a good week. Thank you for the time and love of the people today, the volunteers, and Genevieve and Parker's time this week.  Please bless them and their families. Thank you for a safe treatment for Ryan today and the care and thoughtfulness of the nurse.  I ask that you continue to heal Ryan, keep his immune system strong, let his body rebound from the chemo effects, and keep his spirits high.  I ask this in Jesus' name.  Amen. 

Day Sixty-four

 "Now, our God, we give you thanks, and praise your glorious name." 1 Chronicles 29:13

The treatment went well today.  Thank you, Lord!  Ryan was comfortable at the doctor's office, he didn't fear the needle (didn't like it though), and finished the treatment like it was just another thing to do today.  His counts were down, and we talked to the doctor about a transfusion again.  He said that he might need one (better than before when we thought he'd need at least two), but then again he might not.  We'll pray on that.  We also talked about the next scans, which we will try to do in April at the next big treatment.  We'll have to see if that can be done because in-patient procedures can't be scheduled until Ryan is admitted and he will only be there for 1 1/2 days.  So, if that doesn't work, we'll schedule it as an outpatient procedure the following week.

Today was a big day at the clinic.  It was Superhero Kids Day and there was a lot of people.

Mirjan was supposed to be interviewed by the local news, but when we finished the treatment they were gone.  The hospital communications director apologized, but Mirjan wasn't upset.  I had already nicknamed her "Hollywood" and was sure that this was her big break. :)   I took a picture of her before the interview time, so we would have a "before superstar picture."

John and Samia had gotten a fireman hoodie from the St. Baldrick's Fair the week before, and Ryan loves it!  God's love displayed.  John also got him a bowling set because they bowl every week.  I think Ryan ended up trading it in for a set a marbles, which I played with him several times today.  He likes to make up his own rules, and as a result, he won every time. 

The firefighters were there today too, and Ryan got a helmut and a picture with the heroes.

Here are some other random photos from today.  Emma found her belly button and has to show me every time she sees me. 

When we got home, Ryan was tired and ended up dozing on the couch watching a movie.  By the evening, his energy returned and he was having a good time.  He likes to play General John, which is me acting like a drill sergeant and talking loud nose to nose with him.  So, we did that about 100 times tonight. 

Mirjan chased down a short-change issue today and finally got it resolved.  First, she didn't get the interview that they called her about, and then she was shortchanged and it took a while to resolve it.  Oh, she did interview for the Superhero Kids organization.  I'm not sure what will happen with that, but it was a good thing.  Smile, Mirjan, I love you!

Father, thank you for a safe treatment for Ryan.  Thank you for giving him courage and confidence and really making the needle a non-issue for him today.  Thank you for the love and caring displayed through the volunteers and medical staff.  It is amazing how your love through others is truly changing lives at the hospital. Lord, I ask that you continue to hold Ryan in your hands, keep him healthy, and continue to heal his little body.  In Jesus' name I pray.  Amen.