Monday, July 27, 2009

Monday...

Caleb is still sleeping, he has his nights and days all mixed up so needless to say mommy is very sleep deprived again. He has been really upbeat this time around, he jokes with the nurses, he is eating and drinking and he is just really in a good frame of mind. Now if I could just get him to sleep at night and stay awake during the day!!! We should get to leave here around 5:30 pm tomorrow...we'll see, his chemo was an hour late this morning. The fault lies with the pharmacy not the nurses, for the most part he has wonderful nurses up here. I guess thats all for now, I just wanted to update you on how he is doing this time around. Have a blessed week and remember...
Mark 10:27Jesus looked at them and said, "With man this is impossible, but not with God; all things are possible with God."
Philippians 4:13 13 I can do all things through Christ who strengthens me.

Friday, July 24, 2009

New Post

We are in OKC for chemo. This is a five day treatment, so we get to settle in for the long haul. We have a nice big room this time (yippee). Caleb is doing fine, he has played playstation, watched TV and right now he is playing Farmtown on Facebook. Nothing is any different here than at home except he is attached to the pole. Oh, and he can't sneak out when I'm not looking! :) Yesterday they had a blood drive in Caleb's honor, it went well, I think. There were people that came that had no idea who we are, they just saw it in the paper and came. I had one gentleman tell me it was an honor to give, it does the heart good to know that there are still people that care.
Zephaniah 3:17The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.

Tuesday, July 21, 2009

Blood counts...

Well, Caleb had an appointment in OKC today so that he could go in on Thursday for his next chemo but his platelets are low so he will do more cbc's on Thursday and if his count is up then he will go in for chemo on Friday. This time will be a 5 day treatment and I don't like the 5 day treatments because he refuses to eat the hospital food, so he winds up going days without eating and he won't tell me what he wants to take with us this time. Other than that he is doing really well. He is eating and drinking plenty of fluids, he is active so I wasn't really sure his counts would come back low, the only sign this time are the dark circles under his eyes. Right now he is across the street playing and he will be in BIG trouble when he gets home because he snuck out the back door! (I'm wearing my best angry face) Have I mentioned that his hair is coming back? They say he will lose it again but is sure is nice to see, it adds so much color to his face, he looks healthy! I hate that he lost his leg, but as soon as they took it his color came back, he isn't gray anymore, his lips and cheeks have color! He is a beautiful boy (yeah, I know, I'm not supposed to say that about a boy) but he is. We talked with the Dr. today about whether to go to school or not and we are in agreement that he should wait until January to try to go back full time. I will let him go some, like he was doing before school let out for the summer, so that he stays plugged in and doesn't get so depressed. Well I think I better go drag the child home, it's getting dark out.
Numbers 6:24-26
24 "The LORD bless you and keep you;
25 the LORD make his face shine upon you and be gracious to you;
26 the LORD turn his face toward you and give you peace."

Tuesday, July 14, 2009

Swimming...


Well they did not cast Caleb's leg yesterday, they have to wait for the insurance to clear it first, not really sure how long that will take. We did find out that only the top half of the leg will be able to have the tatoo (at least for now), so I'm not sure what he will do yet. The phantom pain has pretty much disappeared so that is wonderful (for both of us). He is drug free now, I did give him a pain pill the other night after he fell on his tail bone because it was hurting pretty bad, but other than that, he hasn't had any pain meds or valium since last Thursday night in the hospital. A couple of days ago he went to stand up and he said he just forgot that his leg was gone and fell backwards right onto his tail bone. He seems to be ok though, it scares me really good every time it happens. Have you ever seen the movie "Passion of the Christ"? There is a scene where Jesus falls and as his mother runs to him she flashes back to when he was a little boy and he has fallen and she is running to pick him up... They are never so big that we don't have the need to run and try to help them up. He has been out in the pool, he just came in and is looking over my shoulder right now, well there he goes... This is the first time that he has been in the pool since the surgery. I took pictures of the boys in the pool so as soon as Jacob gets them on the computer I will get this posted. By the way, he has done really well since coming home from the hospital. He is eating and drinking and it has just been completely different than the first time around with the chemo. I am very proud of him. If we stay on schedule Caleb will finish chemo the week after his 13th birthday, which is October 15th. He still has a very long process with the leg and he will have to go back every 3 months for a very long time, but hey, we are getting there!


Continue to live in Him, rooted and built up in Him, strengthened in the faith as you were taught, and overflowing with thankfulness.
— Colossians 2:6 (NIV)

Friday, July 10, 2009

This too shall pass...

The last few days have been kinda rough. A few days ago Caleb commented to Jacob and I both that we were lucky, we have two legs and then in the middle of the night I went to check on him and he was standing in front of the mirror looking at himself. The look on his face was so sad, it was very hard not to cry, but sometimes crying with him isn't the answer. I told him it is ok to feel that loss but that he has to go on, feeling sorry for himself will destroy his life. Thankfully, he doesn't get like that very often. Wednesday evening he was trying to get his shoe out of his closet and fell, hard, on his good leg, and cut his knee open a little bit. Yesterday, here at the hospital, I had come out of the restroom and was drying my hands and he asked me if it hurts me, I asked if what hurts me and he lifted his leg...I said yes, sometimes I look at him and it hurts me, for him...Right now we are still at the hospital doing chemo, we will get out of here late this afternoon. He had a pretty rough night. First he had a headache then his knee started hurting where he fell on it and then the phantom pain kicked in, 3 hours after he told the nurse he had a headache she brought him pain pills, by this time he was so worked up that I asked about the Valium so she had to call down and order it, and honestly I can't tell you how long that took. I don't know when we finally got to sleep. Then he woke up and needed to go to the bathroom...Now I am sure most of you know that when you are in the hospital they have to measure every thing, so that means Caleb has to pee in what they call a "urinal". So...he wakes up at around 4, needs to "go", I am sleeping, and I wake up to what sounds like water pouring on the floor... It is hard for him to hobble to the bathroom with one crutch, and his IV pole so I told him not to, to just sit on the edge of the bed, well he stands, but ok...so he lost his balance, and missed the urinal... I can laugh now, it was not funny at 4 this morning... so he got his balance back and then lost it again and fell over, barely landing on the very edge of the bed, gets up and starts to go the other direction! It could have been very bad! After they came and mopped and Caleb was back asleep , me and God, we had us a nice long talk!!! I let Him know just what I thought of all of this, not that He didn't know already, I just hadn't said it to Him. I tend to put up walls, shut people out, including God. It is very hard for me to lean on any one or anything, even God. I just almost can not ask for help and that is exactly what God wants us to do, ask, seek, knock... He wants to help, to be needed, wanted, to just be there...I got on here at around 4 this morning and posted on of my devotions for the day and a couple of scriptures so I'm gonna leave it at that, please read it also.

One of Todays Devotions

Philippians 1:6 He who began a good work in you will carry it on to completion until the day of Christ Jesus.
Thoughts on today's verse
God made the world in 6 days. Now he sustains it with his powerful word. But in each of us, he is still at work and will continue to work to his glory (see Philippians 2:12-13) until Christ comes to take us home!
Prayer:
Thank you Father, for being at work in my life. I confess that at times you seem distant, but looking back over the crucial moments where things were held in the balance, I can see your fingerprints and your grace leading me to where I am today. Please make your presence more powerfully known in my life as I seek your will and live to your glory. Through Jesus I pray. Amen.


Matthew 19:26With men this is impossible, but with God all things are possible.

LORD, you have assigned me my portion and my cup.Psalm 16:5 NIV

Monday, July 6, 2009

Just thinking...

I have realized, it is getting harder for me to update this...
The weekend has been a mix of emotions for Caleb and I. He wanted so very badly to go out with the kids during the day on the 4th, he would go to the door and watch and finally he went to his room and laid down. Now, he could have gone out, no one was making him stay in and later when everyone, adults included, went out then he did to. He didn't shoot off as many of his fireworks as the other kids did because someone would have to carry his stuff because of the crutches. He didn't complain too much though. He is getting pretty frustrated, he can't even carry his own plate to the table, really, it's hard for him to even make his own plate. Yesterday, I was outside working in my much overgrown "garden" area and the boys came out. Now honestly, Caleb doesn't go outside much anymore so it's good he was outside. Eventually Jacob took off running and the dog was chasing him and after a couple times around the front yard Caleb said " I will never be able to do that again", I immediately told him yes he will, but it comes out of nowhere and hits you like a ton of bricks, "wow, he can't do that", Then there is the whole shower situation, it is really difficult for him to take a shower in either of our bathrooms. Last night we were watching tv and a commercial came on for one of those tubs that you can walk into, and he says to me " I want one of those!", he is right it would be so much easier for him, I would love to be able to remodel the bathroom so he could have that but it is not possible. Caleb is a little fish, he loves the pool, but now he can't even do that because we have no railings to hold onto to get up the steps, (it is an above ground pool). There are just so many things that are so much harder now...you just don't think about some of these things, and it seems like it is something new everyday. Some things will get much easier when he gets his leg, he will be able to regain some of his independence then but some things like showering and swimming...that won't change. He is still having a LOT of phantom pain at night, so we are not getting much sleep, at least I'm not, I let Caleb sleep really late because he is up half the night, I do have that option. We are still listening to music to get to sleep and once in awhile Caleb will actually sleep in his bed instead of on the sofa. I have gotten to where I sleep better in the recliner than in my own bed! That is just kinda sad, is it not?
New update...I just got off the phone with the Dr.s office and Caleb's echo is scheduled for tomorrow at 3 and the date to restart chemo is now on Thursday. He starts back up with a short treatment, this is the one that causes the mouth sores and nausea. They give him medication for the nausea but for the mouth sores he needs to drink a lot of fluids before during and after and he just won't do it, so please keep that in mind as you pray for him. Sometimes I look back over these before I post them and think they sound whiny, but I'm not whining or complaining, I am merely stating the facts of our lives. It will all eventually work out, God is taking very good care of us through this, and I know that He will continue to do so.
Lord, so often our weakest moments become our strengths. Thank You for the little things that help us to remember to push on.

Psalm 55:16-18 But I call to God, and the LORD saves me. Evening, morning and noon I cry out in distress, and he hears my voice. He ransoms me unharmed from the battle waged against me, even though many oppose me.

Friday, July 3, 2009

Life...

My stepmom passed away one week ago today. This was unexpected, she wasn't in good health, but she was just at our house the Sunday before. Linda was so good about calling and checking on Caleb, she would bring him chocolate shakes and in the beginning of all of this with Caleb, she gave him a little cross necklace to hang onto and he did, through the first chemo treatment, he asked for it on the first night and slept with it, we will miss her. To see my dad cry is almost as hard as watching Caleb go through this. I am praying that the next six months hold nothing but good news and good memories.
Last week the orthopedic surgeon released Caleb to go back in for chemo and to be fitted for his leg so on Tuesday of this week we went to the clinic to see the Dr. and he said Caleb is doing great and agreed that we could wait until next Wednesday to start chemo again. Jacob has a Dr.s appointment on Tuesday and I opted to put off chemo for one day so that we didn't have to change his appointment. The fact that I made a decision to put him first seem ed to really mean something to him, so I think we probably need to do that more often. I know that Jacob is feeling very left out through all of this, they are both getting the short end of the stick. Jake tries so hard to act like he can't stand Caleb but the other day he and I were in the laundry room and Caleb was coming out and fell down the stairs and Jacob ran and caught him before he could hit the ground, then later that night, he picked him up off the floor and carried him to the couch. The way these boys fight sends me right to the edge most days and then these little, short moments of reaching out touch me so much, and keep me going another day. Ok, so back to the schedule... Caleb is supposed to have another echo but they haven't called me yet with that information so I don't know when that will be, it was supposed to be on this coming Tuesday after Jacobs appointment but we'll see. So, Caleb does chemo on Wednesday, it is the short cycle, and then the following Monday he goes to be cast for his leg. On Friday of that week he goes back for fittings and then more fittings the week after that. Soon he will not have to use the crutches anymore. He will be relieved. Yesterday we were at Wal-mart and there was a little girl staring at him, I had not noticed this, but Caleb had put his crutches in the basket and was standing behind it so you could not see his lower half unless you came up from behind us. He finally said to me " I hate that", when I asked what he said the staring so I turned and saw the little girl. I've tried to tell him that the little kids are just curious, they just want to know what happened, they are usually sad for him but it still hurts him, he feels like a freak, anyway...I made eye contact with the little girl and she asked me very quietly what happened... so I told her. Every day it is something new, a new experience for us...stretching us, pulling us, refining us... He had a bad night last night, it has gotten so much better, so last night was a surprise. The "sock" that he has to wear over him stump causes his leg to hurt some, and he walked through most of Wal-mart yesterday, so by the time we got out of there he was already in some pain and we just couldn't get it under control until about 4:30 this morning. He is sleeping right now (9:40) and I will let him sleep as long as he wants today. Well, I better get this posted, I have a long day ahead of me...preperation for tomorrow...Have a happy and safe 4th!!! Remember this, God is still God, He still watches over us, He loves us, each and every one...
"But the LORD is in His holy temple; the LORD still rules from heaven. He watches everyone closely, examining every person on earth."
Psalm 11:4 (NLT)