Peaceful Week

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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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.