Gabey D. and His Leukemia

Decadron Stinks! LOL!

2009-03-20T05:45:00.000-07:00

As Gabey gets older, the steroid that he's on every month, has started to affect him more and more. He acts like he has PMS. It's been really hard to stay calm and not get upset with him. His emotions are in high gear. He's been obsessed with a Hot Wheels game we have on the Wii, and he gets so upset while he's playing it, and freaks out when we tell him to stop the game. Everything makes him cry, and he's getting angry more now too.
This month, he has wanted to eat "grass bread" all the time... the garlic texas toast we have. He ate it for every meal one day. His lips are a bit chapped though, so he's not eating the salty stuff like he wants, because it hurts his lips.

His nails have done ok, only 2 of them have actually started to fall off. I've been putting bandages on them, so they won't catch on anything. The one came totally off, and chrissy cut it off the rest of the way.

His counts were high for months and months, and then this month, the high doses of chemo, and getting sick with a bug drove his counts down to 360. They took him off chemo for 2 weeks, and we'll go back in next thursday to check again. He's feeling fine, but we're having to stay away from crowds and stuff, so no church for him, and no mall or anything. We've just been hanging around the house. There were a few nice weather days this week, so we were able to play outside. I was thankful for that.

Bills are a bit overwhelming.

2008-11-07T06:08:00.000-08:00

We used so many credit cards, and stuff for last year, being with Gabey in the hospital, and stuff. Those haven't been kind.

Also, the medical bills from Fairview and Cleveland Clinic have just kept building, and a lot of them are in collections now.

I know I haven't asked recently, but if anyone wants to donate to our paypal... at the donation button on the side, we would be so grateful.

God is good, and we will plug away.

Counts Are Where they should be

2008-10-10T09:36:00.000-07:00

We've had a few extra appointments the past few months. Gabey's counts were too high, and they had to raise the level of his chemo. For the study, it's important to keep his counts between 1000-1500. Yesterday, his counts were just under that, so we're ok for now. We have another appointment in 2 weeks for his OR appointment.

Giddy had fun walking around the clinic, and Gabey and him had fun with the wagon.

little tyrant

2008-09-25T04:46:00.001-07:00

gabey's having a hard time going back to regular life after Disney and GKTW. he's been just a bear all week, eeek. temper tantrums, and whining, and just being ornery to everyone, even the dog.

Make a Wish Trip to Disney World!!

2008-09-24T07:40:00.000-07:00

Started a Caring Bridge Site

2008-07-10T04:55:00.000-07:00

http://www.caringbridge.org/visit/gabrieldippong

I should have started a Caring Bridge site last year, but this blog was fine. I'm not sure if you can subscribe to updates on here though, and since I'm updating less often, I thought it would be helpful for you to be able to subscribe to the caring bridge updates. I will still be updating on here, and posting pics, but that will be like the announcement page, lol.

Make a Wish

2008-05-08T17:13:00.000-07:00

We're going to Disney World!!!
I'll write about it more later, I just got done typing that huge update, LOL.

It's been a Year

2008-05-08T16:10:00.000-07:00

We're past our year anniversary. Gabey was diagnosed with ALL on May 1st. We're still here, kicking! Praise the Lord.
Today, we went to the Clinic for his monthly Vincristine chemo, and also his Lumbar puncture to get his Methotrexate chemo. It went so smoothly, they got us in by 10am, which is really rare, plus, we didn't have to run to the m20 desk to register, we were able to get right in. Woohoo. Gabey did really well.
I wanted to write this as a walkthrough, so let me back up, lol.

Since this was a day for his LP, he had to be NPO (no food or drink for 12 hours). Poor Gabey woke up in a great mood, but it just spiraled when he found out what today was. We had to hold him down to put his Emla cream on, that's the numbing cream, so the needle doesn't hurt going into his port. He calmed down a bit, and we started our drive downtown.
We got to the Clinic at 9:30am, we played our game in the garage where we spotted "Tomato" cars (VW bugs), and Pt Cruiser friends, and Hummers! We got a good spot on the 3rd floor, and headed to the elevators. From the window of the elevators, we get to see the construction vehicles working on the CC buildings all around. We went down to the tunnel... Gabey can mimic the "lady's voice" that says... "Level T"
The tunnel is a favorite spot of Gabey's, because there are colored lights all down the tunnel, and he's sort of let free to run it. He also loves the electric car that runs up and down the tunnel.

We made our way to the s20 room, where we get our outpatient chemos, and exams. Gabey plays in the lobby, and looks at the fish. Plus, there are lots of toys, and a magnet table. We always enjoy chatting with the cool receptionists, and I love showing off Gideon, and his fun hair. LOL.

Sheila, our first nurse, brings us back, and takes Gabey's vitals. Gabey knows the routine perfectly, even what color blood pressure cuff to use.
Then, our least favorite part comes, and I am actually able to escape with Gideon out to the hall. Jeff holds Gabey, while the second nurse, usually Linda or Jenn, "access" his port. He hates it, with good reason, but usually he's good, and stands still for them. Sometimes, he's in a really bad mood, and fights a lot, jumping, and crying. He hates the smell of the cleaner pressure. We try to have a nice smelling candle for him to hold, and he always has bunny. He doesn't like when they have to press to get the needle in. His skin is numb, but he can still feel the pressure, and he hates that. But... after that, the day always goes pretty well.

We went down to the "train table" in the main waiting area. We always head there, to get his Vincristine, and play with the trains, and watch videos. There is also a little table, and we can do crafts from the drawer. Jeff and I have a ritual of going to the little kitchen area and getting coffees from the machine. I make my own concoction of hot chocolate, and cafe mocha. Gabey likes the saltines and graham crackers, and juice, but today we were NPO, so no snacks. He was pretty cranky about that, and kept asking for drinks. Poor Guy.

The OR was ready for us really early, and we got to go right in. We went into the prep room, we usually get, room 4, it just works that way. We answered their questions, and Gabey watched Thomas the Tank while we waited. He was quiet and good, probably worn out. We put his gown on, and put a hat on bunny too. They gave him his "happy juice" which is their name for the sedative. It helps so much, Gabey gets a little woozy, and a little loopy, and isn't stressed going back to the OR. I went back with him in my hat and gown. It went really quickly, they just give him his ansthesia, and he's out. I went back to the room, and Jeff ran down to get McDonalds. It's our tradition to get him chicken nuggets for when he wakes up. That went really quickly, and they wheeled him back in after just a bit. They let him take his time waking up, and just moniter him, and have oxygen kind of blowing on him for a little bit.

Today was a really cute wakeup. I looked over at Gabey sleeping, and he just started Chewing!! He sat up, half asleep, still chewing, and then woke up, and said..."Chicken nuggets?" So Cute!! He ate, and we got ready to go back up to get his second chemo. He got to be wheeled in a wheelchair to the S20, and got a present of a sweet white stuffed bunny.

At the train table room, we got to talk to Tom, the child life specialist, and also Linda, our social worker. Tom gave us an invitation for the Tea Party they were having later in the afternoon, and Linda talked to us about Make a Wish. We decided we wanted to stay for the Tea Party, so that was going to be cool. Gabey played and watched TV, and got his VCR. Dan, the nurse, gave him his treatment, and then took his needle out, which he did extremely well for this time. Woohoo.

At 3:30, we were able to go to the party, and had a great time! Gabey got his picture taken with Alice, and we went and sat at the table. There were girls dressed in card costumes, and one was the Mad Hatter, and there was the Cheshire cat, and The Queen of Hearts was there too. They had cupcakes and cookies, and little bottles that said "Drink Me". It was such a cute little party. We decorated black top hats, and the girls kept coming by, giving Gabey stickers, and little playing cards, and even matchbox cars! After a little bit, Alice came up, and did a reading of the Alice in Wonderland story, she was fun. As a surprise at the end, they passed out a copy of the book to everyone! Gabey, and even Gideon got a copy.

Soooo, that was our day. It was a necessary evil, but it had a ton of great little moments in it. God is good. Gabey's counts are being maintained, and he is doing just fine.

love this kind of update :):)

2008-03-14T06:45:00.000-07:00

our monthly appointments have been going just great!
gabey's counts have been just where they want them, and we have no restrictions!! PTL!!

yesterday's appointment went just great. we got to fill out our Make a Wish form!!
we'll hear from them in a few months, and they'll come to the house to talk to gabey, and help him make a WISH!!! wOOHOOOOOOO!!

Got the Sickies

2008-02-05T04:37:00.000-08:00

gabey's sick. he's got a sinus thing going on, and yesterday he had a fever, so we had to take him into the doctor's....

praise the Lord, his counts were high enough that he didn't have to be admitted. it's the rule for fevers that if their counts are below 1000, they get admitted for 2 days automatically. phew, his counts were wonderful. so they just gave him an antibiotic, and we were able to go home. they did a culture with his blood, and will let us know if we need to bring him in again for a different antibiotic.

he is just really under the weather poor thing. draining and runny nose like crazy (clear though, thankfully) and he's coughing from all the draining. his lymph nodes are swollen, and he's got fluid in his ears.
i've been giving him benedryl, and tylonol, and he has been sleeping really well. we have the humidifier fish tank next to him here in the living room, and we have him sleeping in our chez, so he can be elevated.

this is the new fish tank humidifier we just got him. it was a great price at Walmart, and it has bubbles and lights with little fish floating around in the front. it's adorable.

Medicine KING!

2008-01-23T07:48:00.000-08:00

Medicine is old hat now. I'm so thankful!
Gabey actually takes his own medicine. He either sucks it from a little straw in a medicine cup, or pushes the medicine syringe into his own mouth!!
It's been a long road, hasn't it? I'm glad this turn in the bend is here.

Decadron Days

2007-12-22T06:42:00.000-08:00

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

2007-12-21T05:41:00.000-08:00

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

2007-12-18T19:57:00.000-08:00

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!!

2007-11-22T09:36:00.000-08:00

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

2007-11-16T09:26:00.000-08:00

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

2007-11-08T10:21:00.000-08:00

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

2007-11-01T18:44:00.000-07:00

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

2007-10-26T15:45:00.000-07:00

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

2007-10-25T17:05:00.000-07:00

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

2007-10-23T18:49:00.000-07:00

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!!

2007-10-19T05:36:00.000-07:00

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

2007-10-14T07:19:00.000-07:00

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!

2007-10-12T10:31:00.000-07:00

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

2007-10-05T07:34:00.000-07:00

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

2007-09-28T12:35:00.000-07:00

Flashes Of Hope

2007-09-27T15:26:00.001-07:00

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...

2007-09-27T15:13:00.000-07:00

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

2007-09-22T09:20:00.000-07:00

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

2007-09-20T15:20:00.000-07:00

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.

2007-09-18T13:16:00.000-07:00

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.

2007-09-14T07:27:00.000-07:00

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

2007-09-14T04:45:00.000-07:00

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

2007-09-07T04:33:00.000-07:00

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...

Did great

2007-09-04T12:51:00.000-07:00

Well, I just heard from Shari. So far the shots went great. He was a very good boy when they gave them to him. Jeff was with him and had Gabey lay down so he couldn't see the shots. He cried "just a little" as he told Shari. These shots had to go into his muscle so the cream they use to numb the area only helped a little bit. They are still at the hospital as I write. Shari said they have to wait about an hour to make sure there isn't any allergic reaction. So far though there hasn't been any reaction. God is so good.

Next Phase

2007-09-04T08:29:00.000-07:00

Gabey went for his appointment on Thursday, August 30. PTL ! His counts were high enough (they were 1050) to start the next phase. They were only supposed to be 750. So on Thursday, they started a new chemo. I think Shari said that Gabey will be getting 3 new drugs this phase. He is feeling worn out. Shari said that he is sleeping a little more and doesn't seem to have as much energy. We have been so blessed that he has felt so good these past few months. Today he goes in to get shots (PEG) and on Thursday he goes in again for the chemo treatment through his port. This next phase will last for 45 days. Pray that God will continue to protect Gabey and keep him free from infection. God has been so good and we are so thankful.

Week Off

2007-08-24T05:57:00.000-07:00

Today starts a week of NO CHEMO, PTL. He has to get his counts up before we start the next phase, so this week is to help him build up. They have to be at 750 for him to be able to start the next phase on Thursday.

We'll really need your prayers for this phase. It has a few new chemos, and is pretty intense. It will last for 45 days, so keep Gabey in your requests to God during that time. It's his last intensive treatment, and after that, we get to move on to Maintenance, which will last for about 3 years.

Gabey has been feeling GREAT! We've had a fabulous month. I'm so grateful. He lost all his weight, and looks soooo cute. LOL. He's got tons of energy, and STILL has his hair!! PTL!!

Made Me Proud Today

2007-08-16T18:09:00.001-07:00

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!"

2007-08-03T06:45:00.000-07:00

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.

Pray for this Thursday...

2007-07-30T10:32:00.001-07:00

Our appointment this Thursday is another big day.
Gabey has an LP, and vincristine. We'll probably be there all day. Pray that it goes smoothly. God has been so good. He's really given us a nice few weeks. He has kept Gabey healthy, and safe.

Thank you Lord.

You Make Me Happy

2007-07-24T08:09:00.000-07:00

I just can't look at Gabey's fun faces, and not get happy! He makes me laugh so much! I don't know if I have ever laughed as much before he was born.

I was trying to get a picture of his haircut, it looks the same, but it's cut with clippers, which is a big step. :) He's a big boy!

I put this in my main blog, but wanted to put it in here, for anyone who doesn't visit my other site.

God is still taking care of us.

2007-07-20T06:56:00.000-07:00

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!

2007-07-12T16:05:00.000-07:00

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

2007-07-05T15:40:00.000-07:00

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.

The Retreat

2007-07-02T09:51:00.001-07:00

The retreat was awesome! I'm so thankful I got to go. Gabey did great the whole weekend, and was well taken care of by my mom in law, and jeffie. God has been so good to us.

Peaceful Week

2007-06-28T16:34:00.000-07:00

The Lord has been good to us this week. We've had a peaceful week. I'm very thankful.
I'm praying that he stays fever free over the weekend. I'm going a little retreat with the church, and am really nervous about being away. I know that God will take good care of Gabey whether I'm there or not. God is good All the time.

Doing Fine

2007-06-25T06:45:00.000-07:00

We were a little worried on Saturday, and we called the Dr. Gabey didn't have a fever, and he didn't have any other symptoms, but he threw up 2 times during the day. He was acting just fine, so we didn't think we'd have to take him in, but we called anyway.

The doctor told us to just get some Benadryl and see if that worked, and if not she'd prescribe another medicine.

BUT, Praise the Lord, we didn't even have to give any to him. He didn't get sick at all on Sunday, and he's doing fine today.

Appointment went fine

2007-06-21T13:39:00.000-07:00

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.

Doing Great

2007-06-18T07:09:00.000-07:00

I just wanted to pop on, and say that we're doing great! We won't have to go to the Dr. until this Thursday, which is our normal appointment time. Gabey's feeling fine, and acting like his old self. He still has a cough, but I think it's from draining. I get that all the time. They didn't find any viruses, so that's a huge blessing.

He'll get another LP (lumbar puncture with chemo) on Thursday, so we'll just have to pray it goes well.

God is giving us a very nice week. :)

The Lord is still providing for our needs, through our good friends, and family.
Thank you so much!

Great Appointment- WHEW

2007-06-15T04:32:00.000-07:00

Oh, I'm just soooo glad! Our appointment went just fine yesterday. I was praying like crazy. Gabey still has a pretty bad cough, and I was almost positive, they'd put off the LP.

Denise said that it would be the anesthesiologist's call, so we went down there, and I didn't like the anesthesiologist we had! He was talking to Jeff when I got back to the room, and he was saying, they'd do it anyway... and that HE hadn't heard a cough YET. I felt like he was acting wayyy to confident and nonchalant about the whole thing. He wasn't there for last week! He didn't hear Gabey struggling to breathe when he woke up last week. GRRR. I kept my mouth shut, and just prayed. Well, a few minutes later, Gabey let out one of his monster coughs just as he was coming back in the room. So, he ordered a nebulizer treatment, but it didn't really do too much. Well, praise the Lord, Gabey did end up coming back fromt the procedure fine. WHEW. God is soo good. He was breathing normally, and his cough was no worse, and still nice and loose. It was so funny! He decided he wanted to keep sleeping afterwards, LOL. He took his whole nap in post op! ROTFL. Jeffie and i were just hanging around watching movies, lol. He was just fine, he just wanted to keep sleeping.

We had a great day after we got out, we got to go to the store, and Gabey played around with Jeffie quite a bit. He's looking so much better! He's now only 2 pounds over his normal weight! His belly is pretty much back to normal, and his face is getting slimmer too. He has more energy, and strength. His counts were actually good again too! They're still pretty low...1,200 (5,000 is the low end of normal), but they're over 1,000, so he's not neutropenic!! Woohooo!

I got some more pictures. I didn't get two of our favorite people!! WAH. Our nurse practitioner, Denise, is just so awesome, but I just didn't get a chance to take a picture. Jen, Gabey's special friend nurse, was about to come in to get a photo with him, but we had to leave for the operating room. Next time.

Our regular waiting room, we never have to wait long. :)

Our one Doctor, TY. She makes it a point to come and visit with us every time she sees us. I love her.

Linda is our fantastic social worker, and Tom, our Child Life Specialist. He's cool. He gives Gabey gifts, and just hangs out with him. They've both been such a great help.

Gabey's train table, lol. That's what he looks forward to every visit.

We found out that the chairs in the OR waiting room have tunnels! I didn't even notice, until I saw Gabey disappear, and come out at the other end, LOL.

Yet another visit

2007-06-11T15:57:00.000-07:00

This afternoon, I notice Gabey getting sluggish, and i kissed his forehead, and found it hot. :( When I took his temp, it was 102.1. I called, and they asked us to come in again. They said if I could get there before 3pm, I could go to the regular outpatient area, instead of the ER. I rushed us into the car. Poor Poppy had just stopped by when all this was going on, and I was too short, and not nice enough. I called and apologized later. Thank you so much Daddy, for the fruit, and food, and hats. You are awesome. I'm so sorry I wasn't more polite.

We did get there in time, and got to see Denise, and Jen. Since I didn't have Jeffie with me, I just had to leave the room when they canulated him again. The poor thing. They took more samples, and at first said for us to expect to be admitted.

Later, Denise came in, and had AWESOME news. Gabey's counts were 1500, and he wasn't neutropenic, so they said we didn't have to be admitted! (It must have been the Decadron they gave him while he was in the hospital.) They took another test for viruses, and gave him an antibiotic again. But they said, since he's not neutropenic right now, and he's got the symptoms of a regular cough and cold, that we don't have to go back in if we notice another fever, we can just give him Tylonol. They also said we could give him the triaminic strips for his cough.

Our next appointment is Thursday. If his cough is bad, or he's too congested, they'll have to hold off on the LP. I'm glad they're careful about it. Pray that his congestion clears up.

Physician Heal Thyself

2007-06-11T07:12:00.000-07:00

For years, I've always given the advice of how important positive thinking is.
Well, this weekend, I really needed to take my own advice. I was so depressed all weekend, and crying all the time. I was so worried all yesterday that Gabey would get another fever, and that we would have to take him in again.

I had to give myself a talk last night before I went to bed. I was reading in Psalms, and just had to lecture myself on thinking positively. Gabey is in remission, and in a few years, we'll be done with treatment. Things will come up, but God is in charge. I have to not forget that. All the worrying in the world on my part isn't going to change anything, except make us all miserable. This morning, I woke up and decided that today is going to be a good day. Gabey is going to be fine, we're going to be happy, and get through the day.

The sun is shining, and God is with us.

Fever

2007-06-09T19:23:00.000-07:00

I wasn't expecting to have to update so soon. :(
Gabey seemed to have a fever today, and so when we called, they said for us to take him in. We had to go to the ER, and when we got there, HIS FEVER WAS GONE. I was so glad, but then they said they would still have to take a blood culture, and give him antibiotics anyway. Oh, mannn.

They gave him happy juice this time, so he was a bit drunk the whole time. He still was upset when they put the "clippy" in, he didn't fight as much though. It took about a half hour for them to give the antibiotic, by IV.

On one hand, it was funny seeing him act so loopy, but then it was also really sad seeing him that way. I have never liked seeing people drunk, not being themselves. I know they're not all there. That's what it looked like.

He's totally fine, the med hasn't totally worn off yet, he was goofy all the way home. They said he'd probably not even remember the experience. I'm glad about that. It's rough having to have the tuby put in so often. His poor skin is so red and raw from all the tape and bandages.

Pray that he doesn't get another fever. They said if he got another fever, we'd have to take him in again for more antibiotics. :(

Photos of Visit

2007-06-09T05:29:00.000-07:00

Gabey's still got a cough, pray that it gets better. He's fine, and acting great. He woke up this morning, and I noticed a real difference in his weight. I can tell he's getting back to normal. His face is slimmer, and his belly's slimmer too.

I brought my camera on Thursday, and got to take some pictures. We weren't expecting to have to stay. I took pictures of the good parts of our visit. Some nice things happened. One fun thing is that the nurse who put his "clippy" in rewarded him for being so good by doing a handstand! The OR nurse put Sunny Bunny in an OR outfit for Gabey to pass the time. I got a pic of that. When we got admitted to the hospital room, there was a present waiting on the bed for Gabey. It was a really cool tool set. The family room is finished this time, so when Chrissy was up with us, Jeff and I got to go in there for a little bit to eat dinner. (I forgot my sandwich in the fridge there, oops sorry.) In the morning, I was able to sneak in there again before the guys woke up, and had a cup of coffee in there. The showers are open, so that's awesome. If we would have had to stay, I would have taken a shower, but we were leaving that morning, PTL.

This is the OR playroom. We like the magnet tables.

in our OR prep room waiting and watching TV

pretty tired, waiting

putting Sunny Bunny in a fun outfit to pass the time

Jeffie in his gown. he goes in with Gabey until he's asleep

here we are getting ready to leave in the morning, PTL.

cool blinds in his room

here is the famous fish tank on the way off the floor :) Gabey loves these fish.

Night at the Hospital

2007-06-08T10:12:00.001-07:00

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.

Starting Next Phase in Treatment.

2007-06-06T13:10:00.000-07:00

We were able to get the study signed, and they randomized him....
PTL, he's not going to have to have the extra PEG shots!! I'm so thankful.

The next few months are still going to be pretty rough, but I know the Lord is going to bring us through.
I'm going to make up a calendar, so it's easier to see where he is in his treament.

We're still going to have to pray about his counts, and side effects, and fevers.
Some of the chemos in his treatment drive ANC counts down, so we'll still have to be really careful, when his counts are down.

Consent Form

2007-06-05T20:05:00.001-07:00

I talked to the Dr. again, and we have to run up to the Clinic tomorrow to sign a consent form before the COG lab can do the MRD (minimal residual desease) results.
She said though, that what our lab saw was pristine.

So, I hesitate to say remission, until they actually say the word.
We have to see if that lab comes up with anything first.

Still pray that he gets on the path without the PEG shots.

Results from Thursday

2007-06-05T09:23:00.000-07:00

I just got off the phone with Gabey's nurse practitioner, Denise Davis, and she read the results from the bone marrow, and it said.....

NO leukemia cells found!!!

We have to run up to sign a consent form that they didn't realize we had to do. So, we'll know after that what his treatment randomized at.

No News Yet

2007-06-05T06:00:00.000-07:00

This picture is from Saturday. My sister and we went to Goody's for dinner, and then shopping. Gabey was so funny, and silly.

He's getting back to normal. He's laughing and being silly a lot. Yesterday, by afternoon, I was worn out, lol. I love that he's getting his energy back. Even with the extra weight that he has to carry around, he's trying to run, and he's moving around a lot. I'm glad of that. He still has some weakness in his legs, and needs help with stairs, and can't get up from the floor unless he pulls himself up with something. I'm not sure when that will go away, as it's a side effect of some of the chemo. His hair is also getting very thin from the VCR, and we're seeing shedding on his car seat.

I have been trying to be patient. I haven't heard from the doctors yet. I finally just emailed the one doctor yesterday, asking if they had any info yet. I'm going to call them today.

It's been a great week though, and I'm glad. Gabey only has to take 2 meds now, and one is just a tiny dose once a day. The Bactrim though, is gross, and a whole TSP full. We have to give it MTW 2X a day. It tastes nasty, and we try to sweeten it with powdered sugar, and syrup, and that ends up making even more for him to take. He freaked out with Jeff last night, and just refused to take it. :( It's like a cold med to prevent Pneumocystis pneumonia. I wish I could get in pill form, to crush up, I'm going to ask about that when I get to talk to the Dr. today.

Dream Night at the Zoo

2007-06-02T08:59:00.000-07:00

I made a post with a ton of pictures, and also some video of our time at the Zoo last night. I'd love for you to go see it. We had such a good time, and were very thankful to get an invitation from the hospital. :)
www.alwaysachild.blogspot.com

Here are a few favorite pics, in case you don't have time to go to my other blog.

Induction is FINISHED. :):)

2007-05-31T14:43:00.000-07:00

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.

Last Day for Decadron!! WOOHOO

2007-05-30T09:33:00.000-07:00

I've been counting the days til he's off the decadron. most of the side effects that he's dealing with right now, are from that.
the dr. said that his weight would go down fairly quickly after he goes off it.

Tomorrow is the big bone marrow, and lumbar puncture. This set of tests will determine what his next round of treatment is like. I probably won't know the results right away, but I'm praying that he's actually in remission, and gets to be on the "arm" that doesn't include the extra PEG shots. God knows what Gabey will need, and if he doesn't need them, I'm hoping the randomization puts him on the arm that doesn't do it.

Trip to Burger King

2007-05-28T18:13:00.000-07:00

We went for a long drive today, it was so nice.
We stopped for lunch, and for the first time in a month, Gabey got to go in. Burger King. Gabey wore a crown for a little while, and made his onion ring and french fry dance. We had a really great day.

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

2007-05-27T10:27:00.000-07:00

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!!

Off the Decadron next Wednesday

2007-05-26T04:28:00.001-07:00

So, Gabey will be able to stop taking the Decadron next Wednesday, and will stop being plagued by the Eating Frenzy side effect. I'm so thankful. He gained 2 1/2 pounds in 1 week. I'm sure most of it's water gain. I wanted to list the foods that he's been craving, and asking for nonstop. I've been chasing them with Cheerios, and trying to get him to take at least bites of fruit and veggies. He won't eat sweet stuff, or drink coolaid, or juice- just milk or water.
Here are the foods my little bottomless pit wants all the time.....
turkey lunchmeat
bacon
meatballs
pizza rolls
hot dogs
pickles
black olives
cheetos
pretzels
Cheerios
Wheat Thins
grilled cheese
cheese slices

No call yet

2007-05-25T13:32:00.001-07:00

I'll let you know as soon as I know what his ANC counts are. Hugs.

Wonderful Visit

2007-05-24T14:57:00.001-07:00

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.

Gifts for Dr.

2007-05-24T09:59:00.000-07:00

We're heading to our weekly chemo in a little bit, so I did some crafts with Gabey so we could give them to his dr. and nurses. :) I'll come back on later to share his new ANC counts.

Newest Pics

2007-05-21T05:12:00.000-07:00

Gabey is sporting a gift from the hospital... a Mater Costume!

It's so good to see him goofy. He's making faces with Daddy.

you can see the incision mark here, and there's a piece of tape, i just can't get off, LOL. it's cemented on. Then under the incision is the "tubey", his mediport. it's just under the skin, sometimes you can see the bump. there are little marks from the different times he's been accessed. it's been a huge blessing. it's so nice to be able to get his meds and blood samples straight from there, not a ton of pokes in his arm. the emla cream makes it totally numb, so he doesn't feel a thing.

Gabey's outing

2007-05-18T12:31:00.000-07:00

Hi! It's Christine. I thought these pictures would be cute. Shari came today to pick me up for a drive on my lunch. They were getting bored and it was a nice day. He can't really go any where there are people but we were able to go to the park. We had to be careful that he didn't play in the dirt and we kept sanitizing everyone's hands. It was so nice to see them. Gabey was so cute cause he said "take a picture of me by the tree." How could I resist. Here are some of the pictures I took:

This is Gabey doing his "poochie lip". LOL We aren't sure where he got it but it absolutely cracks us up.

Gabey was pushing Shari on the swing. It was cute cause he is weak and really wasn't moving Shari at all.

I love this picture of me and my sweetheart. I sure do miss him.

This is a picture that Gabey took of me. LOL We just have to get him a camera.

This picture was actually taken a week or so before we found out about the leukemia.

"You can take a picture of me and Mommy."

Today's appointment

2007-05-17T08:44:00.000-07:00

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. :)

Can't Praise the Lord LOUD ENOUGH!!

2007-05-14T07:08:00.000-07:00

I am so excited to be able to share this miracle news!!
Our beautiful nurse called today, and shared the results from the bone marrow test from Thursday, and......

It was less thannnnnn.......

1%

That means that the chemo has already kicked out almost ALL the leukemia blasts!!!!!
This is so much more than just good news! This is the best answer to our prayer that God could have given us. What an unspeakable gift! God is so GOOD!!

Now, Gabey doesn't have to get the test done again this thursday, and if things keep up this way, he'll be termed as a RER a rapid early responder!!

Blessing for Today!!

2007-05-13T07:16:00.000-07:00

We got a call from Dr. Gowans this morning, and she told us the results from the spinal puncture. His spinal fluids are still CLEAR!! Praise the Lord!
We asked about the results for the bone marrow tests, and she said she'd have to call back tomorrow about those. So, pray that they find VERY FEW cells left!!

Dear Lord, please let this chemo destroy the lymphoblasts that are crowding out the good cells in Gabey's body. We LOVE you, and trust your power, and your Will.
Amen

Lots of Love

2007-05-12T14:59:00.000-07:00

Since last week, we've been getting so many nice Get Well cards. I'm happy to display them, and to remember how many wonderful people are in our lives, and how much love we're surrounded by.

Haircut for Gabey

2007-05-12T14:52:00.000-07:00

Gabey's Auntie Shelly came over, and cut Gabey's hair. He's still really afraid of the clippers, so she cut his hair with scissors. She did such a great job! I never would have gotten it that short without clippers, and Gabey was calm as can be. He liked it when she blew the hair off his face. :)

I'm Jealous

2007-05-11T14:14:00.000-07:00

Last night, Gabey pointed to Jeff and said.....

"I like Daddy's medicine."

Then he pointed to me, and said....

"I don't like Mommy's medicine!"

ROTFL!!

Jeffie usually gives the crushed up chemo in some strawberry syrup, LOL.
So we're going to try mixing every thing in that stuff!! HAHAHA.

Gabey's Hair

2007-05-11T05:32:00.000-07:00

I was very sad last night. I was playing with Gabey's hair, and I could tell it was changing already.

They have these awesome chemos, but they're not advanced enough to pick and choose which cells they kill. They just target all fast dividing cells, and that just happens to include hair cells, and nail cells.

They said in the beginning, it might thin out, and that in the next few months, he will probably start to lose it.
He's starting to get white hairs sprinkled throughout his hair, and I know soon, it will start to thin out. It just is so sad that it has to be that way. I know it's a little thing compared to this huge sickness that the Lord is bringing him through, but still, I'm sorrowful that his sweet little kid hair is going to be lost. We're going to cut it pretty short beforehand, so he doesn't get too upset by seeing his hair fall out.

Cranky Gabey

2007-05-10T13:55:00.000-07:00

Gabey has been through so much this past week. I'm not surprised that this picture turned out looking cranky.

This is his new booster seat. We were planning on waiting to get him one, but since he has the mediport in, we didn't want the 5 point harness of his old one rubbing on his chest, and hurting it. We were able to use some of the gift money we got recently to purchase it. Now, I can rest easy that he'll be comfortable in the car.

First Outpatient Appointment

2007-05-10T13:39:00.000-07:00

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. :)

Light the Night Walk

2007-05-09T09:52:00.000-07:00

Hello everyone! I just registered to participate in the Light the Night Walk for The Leukemia & Lymphoma Society. It will take place on September 29th at Jacobs Field. If you would like to make a pledge or donation to help, you can visit this link: http://www.lightthenight.org/site/c.itJZJ7MOIwE/b.710065/k.CBBE/Home.htm.
Just look in the top left corner of the page, do a name search for me, Jeffrey Dippong, and it will take you to a page where you can contribute to my amount raised for the walk, as well as see the progress I'm making in fundraising. Thank you in advance for any contributions made!

My Version of "About Leukemia"

2007-05-09T05:08:00.000-07:00

The way the doctor explained his cancer to us is this....

A white blood cell's normal function is to be born, mature to become effective, and then divide to make more cells.

The problem with the leukemia blasts is that they're little immature white blood cells that have forgotten how to mature, they stay baby, and ineffective. The major problem is that these immature cells start dividing! So, you have all these baby cells with no use at all, suddenly filling up the blood stream and the bone marrow. They start crowding out the good cells.
The real, mature white blood cells, and the other cells go down, and even the ones that are there aren't working very well.

White blood cells are the cells that fight infections, so when your white blood cell count is too low, that means there aren't enough working cells to fight the sicknesses that we come across every day. They call a person with low counts.... Neutropenic. (It's more involved than they way I'm explaining it.) They have to be really careful about the things they get around, like crowds, dirt, sick people.

The doctor said one of the best defences is just hand washing CONSTANTLY, lol. That is one of the biggest ways to pass sickness. We're trying to keep Gabey away from crowds, and people who have colds etc. Mostly, right now, we're just hanging around the house. We're home, and we don't want to have to get admitted again.

This is the survival rate copied from the Leukemia Society webpage....

During 1996- 2002 relative survival rates overall were:
Acute lymphocytic leukemia (ALL): 65.2 percent overall; 90.5 percent for children under 5

About Acute Lymphoblastic Leukemia (from Leukemia Society)

2007-05-09T05:03:00.000-07:00

About Acute Lymphocytic Leukemia (ALL)
About 3,930 new cases of acute lymphocytic leukemia (ALL) are diagnosed each year in the United States. It is the most common type of leukemia under the age of 19. Children are most likely to develop the disease, but it can occur at any age. Acute lymphocytic leukemia may be called by several names, including acute lymphoid leukemia and acute lymphoblastic leukemia. ALL results from an acquired (not inherited) genetic injury to the DNA of a single cell in the bone marrow. The disease is often referred to as acute lymphoblastic leukemia because the leukemic cell that replaces the normal marrow is the (leukemic) lymphoblast. The effects are: 1) the uncontrolled and exaggerated growth and accumulation of cells called "lymphoblasts" or "leukemic blasts," which fail to function as normal blood cells and 2) the blockade of the production of normal marrow cells, leading to a deficiency of red cells (anemia), platelets (thrombocytopenia), and normal white cells (especially neutrophils, i.e., neutropenia) in the blood.

Causes and Risk Factors
In most cases, the cause of acute lymphocytic leukemia is not evident. Few factors have been associated with an increased risk of developing the disease. Exposure to high doses of irradiation, as carefully studied in the Japanese survivors of atomic bomb detonations, is one such factor. Unlike other forms of leukemia, acute lymphocytic leukemia occurs at different rates in different locations. There are higher leukemia rates in more developed countries and in higher socioeconomic groups.
The current causes of acute lymphoblastic leukemia in children or adults are not known. Scientists continue to explore possible relationships with life-style or environmental factors but no firm conclusions have yet been reached. Given the amount of study, this suggests that multifaceted complex factors may be involved. It is extremely disconcerting to patients and their families to wonder what they may have done differently to avoid the disease. Unfortunately, at the present time there is no known way to prevent the disease. Acute lymphocytic leukemia occurs most often in the first decade of life but increases in frequency again in older individuals.

Symptoms and Signs
Most patients feel a loss of well-being. They tire more easily and may feel short of breath when physically active. They may have a pale complexion from anemia. Signs of bleeding because of a very low platelet count may be noticed. These include black-and-blue marks occurring for no reason or because of a minor injury, the appearance of pinhead-sized, red spots under the skin, called petechiae, or prolonged bleeding from minor cuts. Discomfort in the bones and joints may occur. Fever in the absence of an obvious cause is common. Leukemic lymphoblasts may accumulate in the lymphatic system, and the lymph nodes can become enlarged. The leukemia cells can also collect on the lining of the brain and spinal cord and lead to headache or vomiting.

Approach to Diagnosis
Medical history and physical examination
Complete blood counts
Bone marrow examination
Cytogenetics
Immunophenotyping
To diagnose the disease, the blood and marrow cells must be examined. In addition to low red cell and platelet counts, examination of the stained (dyed) blood cells with a light microscope will usually show the presence of leukemic blast cells. This is confirmed by examination of the marrow which almost always shows leukemia cells. The blood and/or marrow cells are also used for studies of the number and shape of chromosomes (cytogenetic examination), immunophenotyping, and other special studies, if required.
Blood and bone marrow samples are used to diagnose and classify the disease. The following tests are used in the further classification of the disease. Examination of leukemic cells by cytogenetic techniques permits identification of chromosomes or gene abnormalities in the cells. The immunophenotype and chromosome abnormalities in the leukemic cells are very important guides in determining the approach to treatment and the intensity of the drug combinations to be used.

A Spoonful of Sugar

2007-05-08T19:44:00.000-07:00

I think Gabey would need a mountain of sugar to be ok with taking all these medicines.
He has 6 medicines to take, and most are 2x daily. They're all liquid, because of course he's too young for pills. Well, this is a huge fight. We're still working on helping him stay calm for it.
Also, he has a pretty strong gag reflex, and if one of them hits his mouth wrong, out they all come. We then have to give them all over again. Yikes. It's happened twice so far since he's started meds last week.
This evening, I at least got him to eat some smarties after every med. We're thinking of getting a ton of matchbox cars, and giving him one every time he takes it, just to help him learn to do it more willingly.

Pray that he keeps his meds down, and learns to take them without getting hysterical and fighting every time.

The Beginning

2007-05-08T09:48:00.000-07:00

last Sunday Gabey woke up just crappy. he said his leg hurt, and he didn't want to eat or drink. all day, he just was just laying around like a slug on the couch. i assumed he had a flu. by Monday, he still wasn't feeling well, and still wouldn't drink. that was what made us decide to take him in. i thought he might have to get on an iv to get re hydrated or something.we went to a PEDs urgicare at Fairview, at about 4pm and when we mentioned his leg, they took x-rays, and then took some blood, to check for infection.after a long time of waiting, they came in and said they were moving us to Cleveland Clinic, because they found that his blood had some abnormalities in it, that he was anemic.we totally were still thinking infection. so Gabey and i rode in the ambulance to Cleveland Clinic Ped's. Monday night at about 8:30.test.... test... test....it was horrible to see him. they had to take blood a lot, and he was on an IV. what a mess. then they came in on Tuesday, and broke the news that they had found blasts in his blood, which pointed to cancer.oh, guys, i was a mess. i was just praying and praying. i couldn't really eat. i was just heartsick.but, after it sunk in... the news got better and better. the tests have shown that his type of leukemia is called ALL, which is the most common, best treatable cancer. his age is another positive factor, at responding better. plus, after some genetic study, his chromosomes showed positive, i can't think of the details on that.on wed, they put him under to do a bone marrow biopsy, and a lumbar puncture, and they put in a meta port all at the same time.the lumbar puncture was to make sure there weren't any cells hiding in his fluids, and PTL, there aren't!the meta port is in his chest just under his skin, and has a tube going to his vein by his heart. it makes it so he doesn't have to keep getting poked. (oh, this was a miracle for me! not to have to see his arms getting poked anymore, i hated his pain.) they just numb that area, and put the needle in there, and they can access all his blood tests, give him chemo, and do IV all from that. we call it a "tubey"he's had a lot of chemo already, and this month is sort of full force. it's called induction, and some patients are even in remission after that. but after this month, they'll see how he is, and we'll find out about the next block of time, and what treatment he'll get.he's got such low white blood count, that we have to be extremely careful to keep him away from any infections. so we're hanging around the house, and have to wash all the time. anyone who wants to visit, has to wash, or sanitize... and if any one's not feeling well, they'll have to stay away.I'm thankful we have our church services on the Internet live stream, because he'll need to stay away from church until his counts go up.but God is totally in charge, and He loves Gabey, and has been really moving to guide us through this. I know that we'll come out of this even closer to Him, and to each other.