Monday, November 19, 2012

The Port is Out

Grant's surgery was successful.  We were at the surgery center for about 3 hours, most of it spent waiting.  The nurse, anesthesiologist, & doctor all came to see him.  He chose strawberry flavored gas to put him to sleep, but he told us in recovery that it was not good.  Once they took him back to surgery, the procedure took less than 30 minutes.  He only has 2 stitches on the inside and a bandage on top.  It did take him a while to wake up, but that was expected and typical for him.  Once he did wake up, he downed 2 popsicles and was ready to go.  He was starving, so we stopped for a Sonic grilled cheese on the way home.  He's taking it easy this afternoon, but seems to be doing fine.  He's already trying to clarify the doctor's statement of "no rough-housing for 2 weeks."
So many emotions today.  I feel like this is more final than stopping medication.  That this is a step of faith that he will no longer need that port.  So excited for him to move forward from this chapter of life. And so proud of the brave little guy he has become.  I feel like this is really THE END.






Saturday, November 17, 2012

No News is Good News

Well I can't believe I haven't posted since the first day of school.  Ironically, Grant is no longer in school.  We began homeschooling 2 weeks ago and we are both having a great time.  God has really blessed this decision.
In medical news, Grant has been doing amazing.  After stopping chemo, his counts have been "perfectly normal".  :)  You know how carefully I use the term "normal".  He continues to see Dr. Heym every 4 weeks and is getting a great report each time.  Because of these good reports, we have reached another milestone in this process.  Grant will have his port removed on Monday at 9:30 a.m.  We took a picture of what it looks like with it in as a little momento.  



He says he is ready and it seems to be so.  I explained the process to him and all that was going to happen that day and he responded with a simple "ok".  Maybe he is more ready and relaxed than mom. I am so thankful that this day has arrived and it's just another answer to many prayers that he no longer needs his port.  However, I never like it when they have to put my baby under anesthesia.  Thankfully, he is so big and brave at this point, Rudy and I won't even be in the room when they put him under.  They will just wheel him back and give him "flavored" gas to put him to sleep.  (He's still trying to decide which flavor he will choose.)  They told us the procedure usually lasts less than an hour.  
I remember sitting in the waiting room 3 1/2 years ago when they placed his port.  I remember how scared I was of the uncertainty that lay ahead.  Today, as tears come to my eyes, I rejoice in the faithfulness of my God.  I rejoice in the strength of my son.  I rejoice in the trials and where they have brought us.  I rejoice in the many blessings and miracles God has given us.  I leave you with the words that have echoed in my mind and heart over the last 3 1/2 years.  God is Good!


Tuesday, August 28, 2012

First Grade



Well, here we are, first grade!  Grant was very excited to go back to school today.  We went to meet the teacher last week and Grant loves her.  :)  God is good!  I was chatting with her to give her a little background information on Grant.  And she has had a student in her class before with leukemia!  I couldn't have planned that better.  Thank goodness God is in control!
He went to the clinic yesterday for his first check-up with NO CHEMO.  They will continue to access his port as long as he still has it, b/c it has to be flushed.  We scheduled a consultation with the surgeon for this Friday, so we will be able to schedule the surgery to have his port removed at that time.  At this point, we are looking for "normal" counts, which would be anything over 1500.  (Yes, he has been in the normal range for most of treatment.)  Grant has also been completely cleared to resume "normal" life as he would if this had never happened.  The only difference is we still have to call if he gets a fever.  I use the word "normal" loosely.  What does that really mean?!?!  :)  Thank you all for your continued support and prayers.

Sunday, August 26, 2012

Win 1 For Me...

What an awesome celebration tonight at the Cats game.  Grant was already so excited about the game.  But this afternoon, the Cats called me and asked if Grant would throw out the first pitch.  Of course he will!  But, that was just the beginning.  Grant got to go in the locker room before the game and came out with all kinds of signed gear.  Then he got to be on the field before the game.  He did an AWESOME job throwing the first pitch!  Then, the manager asked him to hang out in the dugout and be the bat boy.  What a night!  It was so great to have friends and family (and even strangers) supporting us and celebrating with us.  And the Cats organization couldn't have done a better job at making Grant feel special.  Thank you to everyone involved!  We are excited to move on now.
Back to business - - - Grant has a clinic appointment tomorrow (but no chemo).  And then he will start 1st grade on Tuesday.  Praise God!
video






Monday, August 20, 2012

It's THE END!

A day I thought would never come.  What a journey!  And I know it is not over yet, but we are getting to move on to a much better chapter.  Grant will take his last doses of oral chemo tonight and then....that's it.  No big hoorah, just no more chemo.  As I try to type this, there are just no words for the multitude of emotions I am feeling.  So let me just say this:  GOD IS GOOD!  And he is STILL taking care of Grant and our whole family.
When I told Grant I was going to blog about his last day of chemo, he wanted to "say" a few words:
I am excited about being done with treatment.  I'm ready for my port to come out.  Thank you for being nice to me and praying for me.  I'm sad that I'm not going to see the grown-up friends that work at the clinic as much.  I hope my leukemia does not come back.  Please come to the Cats baseball game with me.
Rejoice in the Lord ALWAYS!

Friday, August 17, 2012

Little Scare

Sunday night we got to go to Legoland and the Aquarium at the Grapevine Mills mall.  It was sponsored by the American Cancer Society, so we had the place to ourselves.  The boys had a really great time.

Then, to add to our "lasts", we thought we were going to have a last ER visit this week too.  Monday morning Grant woke up vomiting.  He was sick all morning, but never ran fever.  Of course, after 5:00, he began to run a fever.  It got up over the "magic" 101 degrees about 8:30, so we decided to go ahead and call the doctor.  For the first time ever, he told us to give him Tylenol and see if that brings the fever down.  If it didn't, or if the fever came back, then we would have to take him in.  Also, Grant takes the most chemo on Monday nights.  The doctor said we could hold his doses for that night to see if that would help his body recover.  By 12:30, the fever was gone and Grant was sleeping soundly.  No ER visit needed.  Praise God!  Grant resumed his chemo on Tuesday and we are back to the countdown......4 more days.
He is so excited to be finished.  I have heard him tell more than one stranger that he is almost finished with his chemo.  Please come celebrate with us at the Cats game!

Sunday, August 5, 2012

It's the LAST.....


We are celebrating lots of "lasts" this month.  This was Grant's LAST chemo infusion at the clinic.  He has completed his LAST week of steroids.  Now, we are just counting down to his LAST dose of oral chemo on Aug. 20th.  Then, Grant is officially finished with treatment.  A day we all thought would never come and now it's so close!  Grant is so excited and we are all excited for him.  I look forward to seeing how good he is going to feel without all that medication in his system.  Good times ahead....
Looking forward:  Grant will continue to go to the clinic for a blood check every 4 weeks for the first year.  Each year after that, he will go less and less.  However, he will continue to see an oncologist regularly for the rest of his life.  He will have to take his Bactrim (antibiotic) for 6 months after completing treatment to allow his immune system to recover.  We will leave his port in his chest for a few months and then he will have surgery to remove it.
Thank you all so much for your prayers throughout this entire journey.  Please continue to pray for Grant as he finishes treatment and adjusts to his new "normal".  

Also, don't forget to get your tickets to the Cats game for Aug. 26th.  We hope to see you all there to celebrate with Grant!

Sunday, July 29, 2012

We are celebrating....

GRANT'S END OF TREATMENT!  Woo hoo!  Please join us for a Ft. Worth Cats game on Aug. 26th to celebrate "no more chemo".  The game is at 6:05 p.m. at LaGrave Field (301 NE 6th Street, FW, TX 76164).  We have reserved a block of tickets.  If you would like to join us, you need to call 817.332.CATS to purchase your tickets.  You just need to mention Grant when you order so you will be seated in our section.  The tickets are $5/person and $5 for parking.  We are so excited for Grant and look forward to everyone coming out to celebrate with us!  Hope to see you there!

Sunday, July 15, 2012

We are proud of you, say we are proud of you!



This is a picture of Grant at the clinic about to be poked.  Can you tell?  Wow, how far we have come.  The picture above that is of Grant's team winning the championship game after Grant's walk-off triple the day after the clinic visit.  This is one tough kid (that loves baseball).  
Grant's clinic visits have been more of the same.  His counts remain high.  Dr. Heym says we aren't giving up on reaching that optimum range, so he continues to raise his chemo doses.  Grant seems to be handling it fine.  Now for the best news of all:  Grant only has one more month of chemo!  He has one more clinic visit on July 30th for his last dose of chemo there.  He will take his at-home chemo until Aug. 20th and then..........., that's it!  No more chemo!  I can't believe it is so close.  
Grant is ready to stop taking medicine every day.  But, he can't remember his life without it.  I am so excited and scared all in the same thought.  God has been so faithful through this entire process and I know he is still holding Grant right in the palm of His hand.  
Love this boy!!!


Saturday, May 19, 2012

Waaay Overdue Update

Grant has been doing great!  We are counting down days until he will be finished with chemo.  After he got out of the hospital, his counts bounced back up and stayed up.  So guess what...they raised his chemos steadily back up.  On his March 19th visit, his counts were actually in the 750-1500 range we've been searching for all this time.  But, it didn't last long.  His counts have been back up since then.  They were really high at his last visit, but Dr. Heym left his chemos alone.  He will have his LAST spinal tap on June 4th and Dr. Heym said he would reevaluate chemo doses then.
You can tell from the lack of updates, we have had a lot going on.  So thankfully, Grant is feeling well.  These are a few pictures of what's been happenin'....
Mother's Day


Grant's Birthday

Happy Easter

Cori Grace

Monday, March 5, 2012

They're baaaack!

Grant went to the clinic today for a regular visit. His ANC was 2690! I guess the boost they gave him worked. Dr. Heym said that by this time that was an accurate number and his bone marrow was working the way it needed too. Otherwise, the GCSF shot would have worked temporarily but then they would be back down. So today he got chemo in his port, a spinal tap, and he will begin steroids and restart oral chemo tonight. We are back on track for now. Although, his oral chemo will start back at half doses. He will go back to the clinic in 2 weeks to reevaluate. Also, Dr. Heym told him he could return to school tomorrow. Yeah! He was happy about that, especially since Spring Break is next week. He really wants to thank his class for the Get Well card. I just can't say enough how proud I am of him and how strong and brave he is. God is good and faithful and Grant trusts in that. Thank you for all your prayers!

Thursday, March 1, 2012

Power of Persuasion

WE ARE HOME! However, Grant's ANC is 0. It was 25 yesterday and Dr. Heym told us he was tired of seeing Grant in the hospital, so if it was anything but 0, he could go home today. The nurses would not look at me this morning when they told me that it was 0. Unbelievable!
When Dr. Heym came in, I told him he had to send us home. I couldn't stay there another day. They had stopped his fluids and antibiotics. And they were only taking his vitals every 8 hours. I promised to take his temperature every 8 hours if he would just send us home. He ended up giving him a dose of some kind of growth hormone that is used in treating other types of cancers to help boost his ANC. All of his other counts had recovered. So, he is basically homebound (way better than hospital bound) and is still at a VERY HIGH risk for infection. If he gets any kind of fever, we have to call and go back in. Please pray for protection and that his body can recover and fight off anything it needs to. So happy to be home!
He will go to clinic for his regularly scheduled visit on Monday and this one happens to be a spinal tap. He will still get the spinal, Vincristine, and start steroids regardless of his counts.

This is a picture of him putting the beads from his hospital stay on his Beads of Courage necklace. Each color or type of bead represents a part of his treatment.

Tuesday, February 28, 2012

Still at the hospital




Making Goop!


Well, more of the same. Grant's ANC was at 0 yesterday and 44 today. So, we are still waiting. He is ready to come home and everybody else is ready too. He still has the virus that he came in with because his body has not been able to fight it and there is nothing they can do to help a virus. But, the virus is also suppressing his immune system and it can't recover. It feels like he is in a vicious cycle that we can't get out of. It is such a helpless feeling.

Please pray for healing. We know God is in control and we don't want Grant to go home if his body can't handle it. So, we just need his body to be strong and healthy!

Saturday, February 25, 2012

More Waiting.....

How long will we have to wait???? Grant's ANC went down for 3 straight days and finally hit 0. So he had no where to go but up today......wait for it.....to 10. So, he is not going home today and probably not tomorrow. He is feeling good and we are all ready for him to come home. When I told Trent this morning that Grant was not coming home he said, "aww (with a grunt), that silly Grant! What is going on?" That is a good question. Dr. Heym says there is no reason to be concerned, but we just have to wait. Today, they will have to take his noodle out and put a fresh one in since it has been a week. Grant is not looking forward to this but I'm sure he will handle it like a champ. He actually tripped and fell on his chest in the playroom 2 days ago. As soon as he saw his nurse, he told her about it and wanted her to check it. She was so impressed that he was so big about it. Please pray for our sanity as we continue to wait.....



Tuesday, February 21, 2012

Still Hanging at the Hospital

Well, yesterday Grant's ANC dropped to 30 and today it is up to 80, neither of which will get him out of the hospital. So, we wait another day. I think he feels okay and he keeps getting good reports otherwise from the doctor. He is pretty weak and doesn't have much of an appetite except for breakfast. He got a little dehydrated yesterday so they hooked him back up to fluids overnight. They have taken him off them again today but we are really pushing the liquids. He slept all night, but seemed to be restless. He is still coughing quite a bit. He has a long road before he is back to normal activities. Our hope right now is that we can get him home so it can be easier on everyone. Thank you for your prayers and please remember to pray for Trent too. This has been a little difficult on him, but he is being a trooper too and really looks forward to seeing his brother.

Sunday, February 19, 2012

Creeping Up

Grant's ANC was 10 yesterday. It was 40 today. So Dr. Heym has said he can go home tomorrow if it is above 100. Please pray for a good, restful night and strong counts in the morning.
Thanks to our visitors today that helped entertain Grant and pass the time. He is feeling well and played a lot of basketball today. It got a little hot though, playing basketball with a mask on. We took it off really quick for this picture.


Saturday, February 18, 2012

Aww Shucks!

My how things have changed. He was perfectly content on his ipod and watching ESPN. The nurse actually commented that we were making him watch that channel and he could watch cartoons if he wanted. Little did she know....that was his request.

Grant started getting a little congested and coughing on Thursday. By Friday morning, he woke up saying he did not feel well. Of course, he wasn't going to let that keep him from school. (Have I mentioned that he loves school!) But, the first thing he said to me when I picked him up from school yesterday was "I had a hard day." When I asked why, he said that he didn't feel good and his head hurt all day. We went home and he curled up on the couch. As we sat there, he temperature just started to rise. The magic number for calling the doctor is 101. He was at 100.9 for most of the evening. It finally crossed that barrier. We called the doctor and headed to the ER about 10:30. Grant was very sad about having to go.
They drew labs and also tested for the flu. The flu test came back negative, but his counts were extremely low. His white blood count was .5 and his ANC was 10. They ordered him an IV antibiotic and admitted him to the hospital. They also gave him some tylenol for the fever. He handled everything like a champ and was in much better spirits about having to be there. He was actually very impatient about waiting for the doctor to tell us whether we could go home or would have to stay. When the doctor told him he had to stay, he actually said "yeessss, I want waffle sticks for breakfast." Who likes hospital food? Oh well, at least he didn't cry over having to stay. Give the kid some waffle sticks!
Hopefully, we will see the oncologist today. His counts will have to come up and show they are on a path to recovery before he can go home. They will hold chemo until his ANC reaches 750. Thanks for all the prayers and we will try to keep you posted.

Tuesday, February 7, 2012

More of the same....

Grant is doing so well with treatment. He had his regular monthly clinic visit yesterday. The biggest problem we are having is keeping his counts DOWN. The treatment is calculated to keep his counts suppressed but not bottomed out. This range is somewhere between 750-1500. Grant's counts have been consistently over 2000 for the last several months. We have increased chemo every month in an attempt to hit that target range. So, it was increased again this month. Apparently, he is just able to process and digest the medication well. Just to give you an idea, he is now taking 9 pills of the chemo he takes once a week and that is just one of the medications he takes. But, when he had to take them last night (all at the same time), and I commented on how many it was, he said, "They don't even cover my tongue Mom." What a champ!
Also, I have to praise him for how brave he was yesterday. There was a new nurse at the clinic, which makes me nervous. And, Grant has to sit on the bed by himself now b/c he is too big for my lap, so we sit beside each other. The nurse counted to 3 and went to poke him and missed his port. Grant was sitting so still and patient. She had to take it out and poke him again. Then, she kept pushing really hard for some reason. Grant very calmly asked, "Why are you pushing so much?" I thought it was a very good question. I don't have a lot of patience for people hurting my child, so I was trying not to look. Grant handled it much better than I wanted to. When I was praying for him last night, I thanked God for sitting on that bed with us and helping Grant to be brave. Grant verbally agreed with a "yeah, yeah" during my prayer and has commented on it several times since. He trusts his God!
The only side effect he is experiencing is some stomach cramping periodically. His least favorite thing is having to miss school for appointments. School gets out at 2:45 and I picked him up at 2:15 yesterday and he was upset. We go back in 4 weeks....