Decadron Days

Every month, we have 5 days of steroid.
It makes him not want to sleep, and makes him wet the bed no matter what we do to help.

Last night, Gideon wouldn't sleep, and I had him in the bed with me for a while and we both finally fell asleep. He got restless at 3am, and so i went to get a bottle. Jeff was up still, because he couldn't sleep. We're both dealing with some sinus junk. He helped me get a bottle, and then Gabey woke up, and came out, chipper, WET and wanting to watch Herbie. (I took the sheets off his bed, and just put a bed pad on, so I wouldn't waste more sheets.)
What a night. I got the baby to sleep, and put him in his bed, and since Jeffie was awake already, I let him stay with Gabey. I'm not sure what time he came back into the room, but I think Gabey woke up one more time after that too. This morning, poor Jeff had to get to work by 7:30, and Gideon woke up around that time, and then Gabey followed closely after that. Now, it's 9:30am and Gideon's asleep, and Gabey's awake. Then, later, if Gabey takes a nap, Gideon will be awake, lol.

We had a fantastic appointment. Gabey's counts are in the range they want to keep him at, so they didn't adjust any of his meds. His counts are ANC 1500, and his platelets are great. They're working to keep it between 1000-2000 for the next three years. It's so nice not to have him be neutropenic, and stuck in the house.

It's funny how much I miss seeing my nurse and doctor friends. I got used to seeing them every week, and now it's once a month. It's a fantastic blessing, but also sad not to be able to chat with them. My one friend, Linda, had her baby while we were out, and our other friend, Regan (I always spell that wrong) is having her baby any day now. I got to see my Jen, and my Denise. I adore them both. I couldn't have handpicked anyone better to take care of my Gabey.

Cleveland Clinic Party on the News

Mother Holds Annual Christmas Party for Sick Children in Honor of Late Son

cleveland clinic christmas party
Cleveland, OH - Every year a remarkable woman puts on a big bash at the Cleveland Clinic for sick children - in honor of her son who died from cancer at the age of four.19 Action News Anchor Catherine Bosley has details.
You'll need a version of Windows Media Player 7 or higher to view the video. If you need to download it, go to http://www.microsoft.com/windows/mediaplayer/en/default.asp. The video player is supported by Microsoft IE 5.0 and above.

Christmas at the Cleveland Clinic

This was so nice of the cool people at the Cleveland Clinic to put together this party for the kids. The place was packed, and all the children looked so happy, and excited. They were getting amazing presents, and seeing their friends, the nurses and doctors. I wasn't there with Gabey when he sat on Santa's lap, so I didn't get to take a picture, wah. He had a good time, and just played with his toys, and with Daddy. I had a field day, running around, giving presents to Gabey's doctors and nurses. I gave some of my photography. I forgot a few people, so I'm going to try to bring in some more for them when we go for our appointment on Thursday.

And Now We Maintain!!

It's finally here!
Gabey's ANC counts were up to 950, and his platelet counts were fine too, so we were able to go ahead with the first treatment of Maintenance!!

Gabey got his Lumbar Puncture with interthecal Methotrexate (chemo injected into his spinal fluid), and his Vincristine push treatment(chemo just injected into his tube).

For the entire 3 years, he'll have a Vincristine push every month, and the LP with IT MTX every 3 months.

His home meds will be...
Decadron- 2X daily 5 days a month
MTX oral- 1x a week (chemo)
6-MP- 1x a day (chemo)

Here are some pics for you!

s20 waiting room with cool fish


in dr. office, waiting to be canulated (have his tubey put in)


cute baby


daddy and Gideon in dr. room


playing in OR waiting room with his herbie and hummer


my first time going back into the OR with gabey!! jeff always got to go back before because the anesthesia wasn't good for me when i was pregnant.


back in the "train room" s20 family room, waiting for VCR push


hello electric car!!


we're on our way HOME!! (running down the tunnel to the parking garage)


cool picture of the cranes at CC- so many cool changes to the place, it's looking great!

Hopefully last week

I was really shocked. I was expecting to go ahead with treatment yesterday. I was positive that his counts would be over 1000, but they were only 490! The doctor said that maybe his body had to fight something over the week, wah. Well, so another week off. We'll be going on wed, next week, because thanksgiving is on thursday.

here are some pics for you....

Still Waiting

We went in today to check his counts, and they were still too low to go ahead with the next phase in treatment. It's not at all a surprise, we were all expecting it.

The good news is that the Lord kept us fever and sickness free this week!

And today Gabey's counts are up to 680. That's still low, but not in the severe range anymore.
The doctors said it would be ok to take him to the family parties this weekend. WOOHOO.
We have an early thanksgiving party, and my hubbie's birthday party at his mom's.

Shocker

We had our appointment today, and Gabey's counts are the lowest they've ever been. He didn't need any transfusions, but his ANC count is only 150. That was scary to hear. I can only thank the Lord that He's protecting Gabey. He's feeling fine, and doing well otherwise.

We're going to be really careful the next week, and limit visiters. The doctor said not to be surprised if we end up in the hospital for a fever. But, the Lord has kept Gabey from fevers so powerfully, I have faith that He can keep him well this week too.
It's, prayerfully, the last week we have to really worry about counts like this.

Rest

We're ready.
Gabey got his other transfusion today, and there was no reaction, PTL.
We'll go in next week for count checks, and then the week after we'll see if he can go ahead with maintenance.

Ready to be Done

Gabey is done with chemo for a few weeks. All of his counts were so low, it's going to take a while to be able to start his next phase. He had to get a platelet transfusion today, and had an allergic reaction to it. He got hives, and had to get more benedryl. Tomorrow, he has to go in again for a hemoglobin transfusion. His ANC is less than 500.
Lord, please take good care of my boy. He is in Your hands.

Shots are DONE

I am so thankful that the shots are all finished. We had awesome help from our friend from church, Laurie. She came a few days last week, and gave him his shots. This week, our neighbor Bryan, came and did the shots 2 times, and Jeff actually did the shot once. It was rough on Gabey, but luckilly, it always went really fast, and Gabey got over it within a minute or so. He doesn't hold grudges, and was giving high 5's afterward. I'm so proud of him.

This Thursday is just to check his counts, and then he'll be on a rest.

Thank you so much Lord. You have made this phase so much smoother than I thought it would be.

Here is my big boy holding his baby brother. I love my awesome sons.

Gabey's Doing Great!!

God has just brought Gabey through this last treatment so beautifully!! He's gotten sick only once, and the Zofran has kept him feeling fine. He's energetic, and happy. You can't even tell he's on these chemos. The doctors warned that most children get really bad side effects from these chemos that he's taking right now. They said that most children just want to lay in bed, and they feel so junky that even touching them hurts. God has just kept all that away for my little miracle.
We have only 3 more days on this treatment, and we have a rest. After that, when his counts are high enough we'll start on "Maintenance". This will be for the long haul of 3 years. He'll get an appointment every month, in that appt, every month, he'll get VCR in his tubey, and then every three months, he'll get an LP also. He'll be taking a few oral chemos the entire time also. It will be quite a break though, from the weekly appointments we're doing now. Prayerfully, his counts will do much better, and we'll be able to start him back in Sunday school, and go out and about.

On a side note.....
Gideon is HERE! I had baby Gideon on Monday afternoon. Here is a little slideshow for you. He is still in the hospital, which has been a lot of added stress to the event. He had a small minor surgery, and then wouldn't keep food down. They have been keeping him to make sure there isn't any underlying problem, and keeping him on IVs. He kept his food down yesterday, when they switched formulas, so hopefully, he'll be home by Monday.

Funny Guy

These are from a little while ago, but they're so cute.

Gabey was sitting on Jeff's foot, and laughing so hard.


I was videotaping the movement of Gideon in my belly, and Gabey came up and started making faces.

Full Steam Ahead!! PTL!

Yesterday, we went to the doctor's and Gabey's counts were up to 2000! more than high enough to start the next treatment. God is so good!

It was a long day, but it went by very well. Gabey was so good, and we kept ourselves occupied quite nicely. We had to be admitted to finish our IV. The one chemo that he got yesterday sticks to the bladder, so they had to put Gabey on IV liquids to make sure everything was flushing well. That took longer than expected after the LP, so we just went up to a hospital room until it was done. It had to be at a certain level before they could give the chemo, and then he had to be on the IV liquids for 4 hours after the treatment. I was so happy to find out that they gave the Ara-C chemo through his line too, so he didn't have to get a shot yesterday. WOHOOO.

God is so wonderful. This day was the day I was dreading for a long time, and the Lord made it go so well. Gabey got sick to his stomach on the way home last night, and threw up, but other than that he seemed to feel fine the whole day, and is doing great today.

So, now that we are going ahead, Gabey will get a new oral chemo called TG (i can't spell the medical name, lol.) and he will get an Ara-C shot tonight, tomorrow night, and Sunday night. He's not upset at all though, because he's looking forward to the cars that we bought him for each shot. He'll be on the same routine next week, and just go in for counts, and the Ara- C in his tubey.

Awake and playing after his LP in the OR




Amusing ourselves while waiting in the hospital room.
We played with ice from the ice machine.



Video of the fun with ice.

Another Week

Gabey's counts were still too low to go ahead with the treatment, so we'll wait another week, and try again next thursday. His ANC is 500, which is better than last week. Whew.

He's doing just fine, happy and energetic. God is taking good care of him.

Beautiful Boy

Flashes Of Hope

The pictures are here!!
We got 2 beautiful 8X10s and 4X6s. They turned out soooo great!







Dr. TY


Dr. Tanya


Dr. Kate


Nurse Jen


We got 3 shots of Nurse Denise, and they're all just photo perfect.

My Lord Knows the Way...

My Lord knows the way through the Wilderness,
All I have to do is Follow.
My Lord knows the way through the Wilderness,
All I have to do is Follow.

Strength for today is mine all the way,
And All that I need for tomorrow!

My Lord knows the way through the Wilderness,
All I have to do is follow.




Right now, we're in a wilderness, and only the Lord knows the plan. I am trusting in Him to guide us through. Gabey's counts weren't good enough to start the next stage of this last phase. They are only 350.

I was planning it all out to have him on a rest period when Gideon is born, but now it's all up to my Lord. I have total faith that what He has planned is the best possible thing for us.

We will go in next Thursday to check his counts again, and go ahead with the treatment if they're high enough (over 750).

Pray for a feverless week. God is so awesome, and has really kept infections and fevers away through most of this. I'm so thankful to serve such a STRONG Lord and Savior!

Hair Cut for the Boys

Gabey was happy to have daddy get his hair cut too. He let me buzz his first, and then made sure Daddy got his done right after.

His head is so soft. :)



His counts on Thursday were 3,000! Woohoo! We'll have a good weekend.

It's Been a Gift

Gabey's hair has been a gift through this whole treatment. He kept it the whole time, until now. We're buzzing his hair tonight, because he's shedding it really badly now. The back has bald spots. I'm sad, but I'm also thankful that it held on longer than usual.

His appointment was easy peasy today, just counts. His counts are still good, because of the decadron.

Pray hard for the next 3 weeks. This week will be an easy rest period, and if his counts are still good, he'll be able to go on in his treatment.

Next Thursday will be really rough, with 3 new chemos. The shots at home will have to strart next week. It's been a part that I've dreaded ever since I learned about them. BUT, praise our Lord, we see the end in sight!

Turkey, Cheese, and Pickles, Please.

Our little chubby cheeks are back. Gabey's been having a blast just eating away. I'm thankful that he's picking a little variety this time, and is including some fruit, and veggies this time. He's doing just fine. The Lord is keeping side effects away, and counts up. Starting Thursday will be a rest week, with no steroid, and no chemo.

Had it wrong.

I was reading his counts, and realize that I had the range wrong.
I was thinking that the ANC count had to be over 5000 for it to be normal.
but that's the WBC (white blood count).

the normal range for ANC is 1500-5000....
and Gabey's at 2000 right now, so he IS in the normal range right now.

It changes every week, so we've just been so happy to have it over 1000 for a few weeks.

Still Going Well

We're through our 3rd week on the new phase, and the Lord is just making it go soooo well. Gabey's counts are up from the steroid, and we've been able to make it to church, and go to stores. The Lord has kept away all of the side effects except the ones from the steroid, which are not serious at all. He's just obsessed with food all the time right now. LOL. We're just giving him whatever he wants, so he'll stay happy. It's not a big deal, and when we don't, he gets so upset. He'll only be on it for another week, and after that we won't have to worry about this at all.

We got to go to part of the service on Sunday.


My boys are worn out... (me too.)

Another Blessed Appointment

It's about 7:30am, and Gabey is watching Curious George, and pretending to be him. It is so amazing that he just had 2 powerful chemos yesterday! God has kept every side effect away! He is so good! The only medicine that affects him is the steroid, decadron. He's my little salami baby. LOL. Goldfish, tomatos, and salami.

Our appointment went really well. Gabey was just a little soldier getting his clippey put in. He closed his eyes again, and actually peeked when the needle was going in. He let out a funny little "ow". He knew it was supposed to hurt, but was surprised that it didn't. LOL. Afterward, he kept saying, "It didn't even hurt," Praise the Lord for EMLA cream (numbs the skin).

We watched videos, and got the zofran (keeps him from getting nauseous from the doxorubicin)and his chemo, and goofed off with the nurses and doctors.
Gabey gave some of the nurses crafts that we made this week.

I am amazed at his counts this week, the decadron is doing it's job. His counts on Thursday were 6600!

Gabey hiding from his medicine...


Waiting with yummy goldfish crackers...


Getting blood pressure...


Nurse Reagan with Gabey...
"My Tubey didn't even hurt!"


Waiting for chemo...