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!

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.

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!

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!

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...

Made Me Proud Today

Easy appointment today, just blood checks.
Gabey was so surprising when the nurse put the "clippey" in!
He closed his eyes, and stayed quiet and still, and just let her do it!
I think it just has to do with what his mood is, I see a lot of different reactions from him. I'm glad today was so great though.

We don't know the counts yet, I'm sure they're still low.

Next week, we don't have to take him in, and we will start next thursday, a week rest from chemo.

The Thursday after that, the end of August will start our next phase... as long as his ANC counts are over 750. I'm praying we keep on schedule, because the Lord has worked it out that we'll be in a rest period between "delayed intensification" and "maintenance" when the baby's due. That would be a big load off, to have a few weeks of rest while the baby's being born.

"I'm an Excellent Doctor!"

Gabey has been playing with his Dr. kit. We pretend to do the clippey on his toys, and he does exams on me, and i do them on him. he has a blood pressure monitor, a stethoscope, a pretend bandage, a medicine syringe, and an ear nose throat monitor.
he goes through the whole routine with me....
and just now, he said...."I'm an Excellent Doctor!"

God has just blessed sooo much this month. Gabey is feeling so well.
The appointment yesterday went well. His Lp went smoothly, and he woke up right away. He was still feeling the "happy juice" so he was a little goofball.

Afterwards, we went back upstairs to get his other chemo, and he played with the nurses, and on the train table.
We have next week off, and then the week after that is just bloodwork. Thank you Lord for giving us this wonderful rest.

God is still taking care of us.

The antibiotic did a great job, and Thursday was his last day. The doctors looked at his toe, and said it looked great. I'm so thankful.

The visit went just wonderfully. We only had to do some blood tests, and get his counts. They also took more blood for the new study we're in.
His ANC count is down again, a little over 600. I'm learning not to be surprised or disappointed at these drops. It's just part of the process. The decadron was the only reason it was up at all last week.

We felt really blessed yesterday. We were talking to Dr. Kate, and she made a comment..."SO, is he ever going to lose his hair?" I took that as a HUGE blessing that he's kept his hair longer than usual. LOL. Even if he does lose it all the way for the delayed intensification, I'll know we had the blessing of his hair for the time we did.

Dr. Kate, and our NP, Denise, were teasing eachother how they both wanted him every visit. Denise said, "NO, we have to share."



I was so impressed by a little boy that came in. I watched while they accessed him. He was Gabey's age, and I was totally amazed! He didn't have the EMLA cream on, and I could tell it hurt when it went in, and he sat there cringing, and made not a PEEP! What a little toughie!! I had to talk to the dad, and compliment the little boy's strength. He said the boy is in his 2nd year now. He had been accessed earlier, but had pulled it out. I'm not sure why he didn't get more EMLA cream, and I'm so surprised by his reaction to the event.

Can't wait for the Pictures to come in!

Cleveland Clinic was hosting Flashes of Hope today, and we were able to get portraits done of Gabey, and also of us as a family. We had Gabey get pictures with all our favorite Dr.s too. They'll be done in about 6 weeks. They're black and white professional quality. We'll get some prints, and also the disk to make more copies. It was so nice.
Here is their website.
http://www.flashesofhope.org/flashesofhope/site/default.asp

The visit was good, just a check up really. They checked his counts which were up because of the decadron he took for the last week. Right now, it's 1300. I was talking to the doctor, she prescribed an antibiotic for him, after I had her check his one toe. It looks infected, and she doesn't want to take chances. She was glad I understand the way the counts can drop and rise. She was saying..."Even though his counts are good right now.." and I added..."Today." and she said.."Exactly." so we were glad we're doing the antibiotic.

Interim Maintenance

We had a nice, easy appointment today. Gabey's counts were just high enough to start on the next phase in his treatment. He's still neutropenic- 810.

This phase is called Interim Maintenance, and it's actually quite a break from the other phases. It will last for the next 2 months.

He had a treatment of Vincristine through his tubey today, and he'll be starting on an oral Methotrexate one day a week, and some more Decadron for a few days at a time. He'll still be taking his 6-MP, and other regular meds, but other than that there aren't any other treatments. He'll have one LP next month, and that's it. We'll still go in for checks on his blood, and height and weight, but it will be a lot more relaxed than the other phases.

Praise the Lord, for getting us to this phase. He is so good to us.

I just love all the doctors and nurses at CC. They all come into the "train room" and visit with him and play with him. Even on days that they aren't working with him, they'll still make a point to stop and talk to him. He's been so good. He goofs off with them, and makes me so proud to be his mom. They always are so shocked to hear him say his "may I" "no thank you" and other polite phrases. I LOVE it. He's a good boy, and I'm so glad that he's making a positive impact on the workers there.

The nurse said today..."You need to make 12 more of him." (shari's BEAMING!)

Gabey's been making crafts for the Dr.s and nurses!


Our good friend, Miss Jen, one of Gabey's nurses.


One of our awesome Doctors, Holly.

Appointment went fine

Well, the good news is that Gabey did great for his procedure, and we were able to go home with no problems.
The bad news is that he's neutropenic again. His counts are like a roller coaster with all this chemo. His ANC is only a bit over 400.
We just have to act as if he's neutropenic even when we see that his counts are up, because they just drop so quickly.

The schedule has us off for next week. We don't have to go in at all. Then July 5th, we'll start the next phase, as long as his counts are over 750.

Pray for no fevers (because he's neutropenic, I'd have to take him in again for fevers, and he'd get admitted to the hospital.)

Also, pray that his counts are good enough on July 5th, for us to go ahead and start the next phase.

Night at the Hospital

Yesterday was our regular appointment for Gabey's LP procedure, and VCR chemo, but when he woke up from the LP, his breathing was pretty croupy for some reason. They decided to admit him overnight to try to get his breathing back to normal. They had some oxygen blowing on him for some time, and they gave him a few doses of medicine from a nebulizer. The first med they gave pushes heart rate up a lot, so they decided to keep an EKG on him, and then after that they gave him a med that didn't do that so badly, and by evening his heart rate was better. By nighttime he didn't need extra oxygen, and I think that 12:30am was the last nebulizer med he got. They also gave him some more decadron, the steroid, so it would help open his airway.
So, it was a long night, but by morning he was sounding better, and they were able to release us by 11am.
I did bring my camera this time, not expecting it to be such a rough time. I ended up taking some pictures anyway. I'll upload them soon.

Gabey's counts drove back down, and he's neutropenic again at around 800. I'm just going to have to not let up on being careful, even when his counts are up.

This week, we went to church, and the store, and the restaurants, thinking he was just fine to handle all of it. It turned out that probably during a lot of those outings, he was neutropenic, and we didn't know it. I really had no clue that his counts would go down that far that quickly. But PTL, he's fine now, a little congested, but sounding just fine, and acting like his cute, silly self.

After we were discharged, and headed out the door, Gabey practically started running down the hall, he was so excited. He started gushing about the fish, and was just so cute all the way to the exit.

We're very happy to be home.

Induction is FINISHED. :):)

Gabey made it through his 29 days! We're so proud of him!
Today, we brought him in, and he had to get another bone marrow test, and another lumbar puncture with chemo. We had to wait for a very long time. It was a rough time for Gabey because he was really hungry. They didn't get him in til after 1pm. We were really hungry too, as we weren't about to eat and drink in front of him. :(
The test went just fine, and we'll know the results of that soon.

His blood counts are way up, even high, because of the decadron, I think that's what the Dr. said. It really helped to build his counts. He is at 11,090 for ANC, which is a little high, and his WBC white blood count is 20,160. We're so thankful, the Dr. said, he can just be normal now, and play with the other kids and stuff. I asked how quickly counts can go down, but she said we didn't have to worry about it this week, and that next week, he wasn't having chemo that would take down the counts. WOOHOOO. He's going to Sunday School on Sunday!

We took him straight to Target, and bought him some special presents for being such a trooper this month.

Pray, Pray Pray, that the next set of treatments do not include the PEG shots. There are 2 different paths he could be on, and one has extra shots, and one doesn't. Pray that he won't have to do the extra.

Drum Roll, Please........

And Gabey's ANC counts are...... (hold your breath!)

3190!!!!
that's still lower than normal (5,000-10,000), BUT it is in the Adequate/Acceptable category!!

Sooo, Right now, he's NOT neutropenic!

I'm just soooooo THANKFUL, his little body is able to fight infection now!

God is the Great Creator, and He's creating those good white blood cells in Gabey's body, and making the chemo work to kill off the leukemia blasts!!
Lord, you are so AMAZING!

Jeffie still wants to be cautious, and I totally understand. We're not sure how quickly counts go down, or up. I have a feeling they won't go back down, but the chemo does drive down counts, so we're still going to stay careful....buuuuut, I will be able to take Gabey one a few outings this week!!

Wonderful Visit

I'll have to write again when I get Gabey's ANC counts, but the visit went really well. His other counts are just great.

The Dr.s and Nurses are all just so loving, and so good to Gabey. It really helps my heart.

Dr. Gowans loved the craft, and said that Dr. Tekautz was going to be jealous, LOL. Dr. Gowans (Kate) is so good with Gabey. They were playing with her stethescope, and she was letting him really listen to Daddy, and herself, and he asked to listen to himself. At one point, she tapped the circle part, and Gabey made the funniest reaction, like major surprise. LOL. He reached right out and tapped it himself right away. I could tell he was on the verge of a smile the whole time.

Our one nurse, Jen is the COOLEST! She really gets along with Gabey; he really opens up to her. He whispers to everyone else, and when we went to the back room (with the train table) Jen came in and was talking to him, and he was outgoing with her. She was just chatting away with him, and took him to get a popsicle.

I just love these people. I am so thankful that they are so beautiful with Gabey. The tubey went in without any problems (he freaked out, but it went in right away). The chemo was wonderfully uneventful, and Gabey was playing with the train table, and talking about the one other girl in there. He asked where his hat was. The girl was wearing the cutest straw hat. She is beautiful. I remember she was in the hospital room next to ours when we were there.

We had our traditional McDonald's chicken nuggets afterward, and headed home.

Today's appointment

Today's appointment went very well. It was over really quickly. All they had to do was take some blood samples, and then give him his vincristine (chemo).
His numbers were down a tad from last week, but he's still over 500, so we're really thankful for that. The Dr. said that it's not a surprise, and that this may be the lowest we see his counts, since he's in the middle of the induction.

The decadron (steroid that acts like a chemo) is taking a toll on him. He's ravenous all the time, and pretty cranky. I'm so glad Jeff goes with us to the appointments, he was really upset when they were canulating (putting the needle in his metiport). He's numb, and didn't feel anything, but he still freaked out a bit.

Next Thursday, we get to go in the afternoon for his vincristine, it will be another quick easy appointment. Wooohoo!!


This photo is on my main blog, but I thought you might like seeing Gabey's goofy face. He loves cheetos, and says "Woweee" after each one. :)

First Outpatient Appointment

We had our first outpatient appointment today, and Praise the Lord, it went really well!
Gabey stayed still for them to access his mediport (put the needle in). We had numbed the area before we left, so I'm sure he didn't feel it. I'm so glad. It went smoothly, Jeff said Gabey was fine, and the nurse accessed it in one quick try.

They took a blood sample, and when the results came back, it showed that his ANC (absolute neutrophil count) was up! That's the number that shows how well he can fight infection. His number was around 300 on Monday, and for a while in the hospital, he had to stay in his room and not play in the playroom.
Today it's at around 800!! That was a prayer answered.
5000-10,000- normal
3000-5000-adequate
over 1000- low risk, mild

NEUTROPENIC
500-1000- moderate risk
under 500- severe risk

His lumbar puncture went smoothly, and the bone marrow biopsy too. He was in recovery very quickly, and had chicken nuggets waiting for him when he woke up. He scarfed them down in a few bites! We went upstairs, and he was able to play in the playroom. The nurse came in and gave him his VCR (a chemo), and we were done!
I keep having a fear that we'll go there, and they won't let us leave. I'm always so relieved to be able to walk back out the doors!

The prayer now is that the results will come back showing that this chemo program is working well. If they're not good, then he'll have to have another set of bone marrow, and lumbar tests next Thursday. If they're fine, then he'll just get his usual VCR chemo.

I brought my camera, but didn't get to take pictures. He liked the Thomas train table in the playroom. :)