Hello. All is going well at our house. We have with ease fallen back into our summertime routine. Wake up without an alarm ringing in our ears (although none of us wake up any later than 7:15 even without an alarm).
Jack had a tiring day yesterday. We went to the pool early, at 10 am then stayed until lunch time, came home and rested for a while. Jack had a 3pm Occupational Therapy appointment. On occassion they will do the therapy in the pool which they did yesterday and they had made it an hour session rather than the regular half hour, then a half hour of physical therapy where he did alot of climbing. On the way home from therapy Jack said to me, "Mom, when you tell me it's bedtime tonight at 8pm, you wont have to ask me twice, I am going straight to bed."
My nana went into the hospital yesterday and she will probably be there for a couple of days. She is in congestive heart failure and has an irregular heart beat in the upper area of her heart, then the lower area is not pumping well, so there is some confusion of the working parts of her heart. She will have an echo today and they will have more information. I had the best time just sitting in the hospital room with her and my grandpa last night. I stayed until 10:30pm. Before I was married and had kids my grandparents had become my main focus, and I loved every minute of it. They have paved the way for our family and shown us what it is like to see a life lived out in service to the Lord. They are not pew-warmers, they are actively seeking how God will use their now weak bodies and soft voices for Him. In their earlier days they were go-ers and do-ers and it has not been easy for them to accept the plight of their weakened earthly vessels as they would still love to be out taking care of others, and not be the ones taken care of. I told my grandpa last night that he was the strength of truth and love in our family for all of us to see and learn from.
I loved just sitting and being with them last night. June 15 my grandpa will be 86 years old, that is my nana's age right now, but on that day they will celebrate their 65th wedding anniversary.
Jack has a blood draw tomorrow and we will celebrate a little boy's birthday at the chemo clinic. Austin will be 5 years old, and he is a spit-fire. He is a ton of fun. I will post and let you know how those counts turn out.
It has taken me about 45 minutes to write this because I have the Today Show on and today is Katie's last day. I am a blubbering mess of tears off and on this morning. I guess I am going to miss that Katie.
Have a super summer day.
May 31, 2006
Hello. All is going well at our house. We have with ease fallen back into our summertime routine. Wake up without an alarm ringing in our ears (although none of us wake up any later than 7:15 even without an alarm).
May 26, 2006
It is Friday! We made it through the last week of school and the pace of our days has come to a screeching halt. The kids are laying around in their sleeping bags after our living room sleepover last night.
We had a great day yesterday. I picked the kids up at school at 1:15 and we headed over to the chemo center to meet Nurse Sara and do Jack's blood draw. No chemo this week or next. Jack's blood counts were 1040 ANC. It is above the 1000 that it needs to be for us to go about our life like normal, thank you Lord for those 40 points. We had a fun swim party with friends and pot luck cookout.
We stayed up till about 10pm, which is way late for my kids watching a movie.
We have arrived at Friday, the first day of summer vacation.
One very exciting happening of the last day of school...Sophie who is in the 1st grade was the only student in the class who had never lost a tooth. Mere hours before the end of the last day of school, Sophie lost her first tooth. She was very excited to show the gap in her mouth to anyone who might like to see. Hooray for Sophie.
I am looking forward to a great summer with my kids.
May 22, 2006
Happy Monday! Today is the last Monday of the school year. I am still counting down...
I have thought and thought about whether or not to post about a very profound part of my family's week last week. Jack was my example to share what happened. I will get back to what he did in a bit.
Last Wednesday night, after church, our family, Tom and Elaine, along with a very dear friend, who is an elder's wife and their son, went to the elder's room. I had spoken to our elder regarding bringing Jack in to be anointed with oil in the name of the Lord, and prayed over. I think that it is hard for me to talk or write about this night because it seemed so intensely personal and sacred, but it was so special I want to share it with you.
We all walked into the elders room together with the large group of men waiting. I think we have about 20 elders. They seated us and asked us to give them an update on Jack and what has been happening health wise and life wise too. After we talked with them for about 5 minutes, one of the elder's asked Jack to sit in a chair in the center of the room, he sat in a chair right across from Jack, so he could talk to Jack face to face. He read Jack the scripture from James 5 referring to the anointing of oil, and made Jack feel so comfortable with this process. This elder then went on to show Jack a piece of paper that he had hanging in the middle of his mirror that had Jack's name penciled in, and Sophie's along with another boy from our congregation typed in. This elder had been given Sophie and the other boy to pray for them 2 years ago. When Jack got sick he penciled Jack's name on the list. He hung that paper in the middle of his bathroom mirror, so when he shaves in the morning it is the first thing he see's and actually has to move his head around it to see his own face to shave. He showed Jack the paper and shared that story with him. Jack's eyes were huge at this point. You could tell that he just felt the love of this elder and the love of all the elders in the room.
At that point the elder showed Jack the bottle of oil you see in the picture and told him he was going to pour it on his head and that all the elders were going to put their hands on him and would say a prayer for him. He poured some oil on Jack's head and rubbed it around a bit, then started the most humbling, amazing, spirit filled,...prayer chain that went through each elder. I looked around the room as the men were praying for Jack asking for God to heal him, bless him, give us all strength....you could have cut the love with a knife, I have never had a spiritual moment like that before, and I have had some blessed moments with the Lord where His presence is apparent, but they were not like this. I just felt the Lord, I felt like the air that I took in each breath was filled with the aroma of prayer and love, love from our family, the elders and the Lord's presence.
Earlier that morning when I was reading James 5 to Jack, Derek and Sophie, explaining to them what was going to happen at church that night, Jack's only request was that I not cry. He does not like me to cry, talk about unrealistic expectations for such an emotional person as myself.
I did not cry but there were tears to be wiped that night, off the cheeks of men, women and children.
I am grateful that we have such a humble group of men who love Jesus and do their very best to shepherd our flock.
The next morning I asked Jack what he had thought about the night after he had some time to think about it. He said that it made his heart feel good. Then he said, I told you not to cry, I said that I didn't, and he said, "I know, but I almost did, I had to wipe my eyes."
The tears almost came when I looked down at Jack during the prayer and the first thing that I noticed was Derek's hand on Jack's scar on the back of his head, and Sophie's hand laying on Jack's arm, that touched me and I hope that when I close my eyes and think about that moment I will never forget the love of Jack's siblings for him and the gentleness that they touched him with that night.
I have shared what I believe to be intensely personal information about my walk with the Lord with the readers of this blog because I feel so strongly that it is through our weaknesses that the Lord is glorified in our lives because of the evidence of mercy and grace He so freely gives, and the transformation of heart. So I am not sure why it has taken me almost a week to talk openly about this night, but Jack told me he was going to take the anointing oil, that the elders have given him to remember the prayer time that night, to school and tell his friends about the prayer time and show them the oil during their regular "share time" on Friday morning. Jack was so imprinted with that experience that he wanted to share it with his friends. And his friends were thrilled to hear about it, some had even seen anointings before and told him their experiences, wow. So the tears have now come as I humble myself before the Lord and open my heart like Jack so gladly opens his.
Thank you our Almighty God for your mercy and grace, may I recognize and take hold of the peace you so gladly offer, may I allow you to take this broken vessell and do your work, may I know that I have victory through You. In your precious and mighty Son's name, Amen.
May 19, 2006
We had such a busy day yesterday, in the morning Jack and Sophie's school went to May Farms for a school field trip. Then Jack and I had chemo, by they way of home to get Jack cleaned up from all the farm animal kisses and twiddles (Ms. May's word for tinkling). Jack's counts were good 1436 ANC, and now we have 2 weeks of just blood draws. Hip Hip Hooray. After this two weeks, we start on the Phase 8, the last 6 week phase and then we will be done with this chemo, his next scan in July will give the doctor's the information they need to decide what the next course of action will be.
We are also counting down the days:
1 more day until the swimming pool opens!
5 more school days (really 3 full days and 2 1/2 days) until school is out for summer!
15 Days until Disney World!
This is the time of year it seems like is FULL of anticipation, excitement everywhere, and it is this time of year that it seems like time just stands still. That old saying a watched pot never boils, a counted school year never ends. It will arrive and the day will be glorious. The kids and I are going to have a living room sleepover, we will all set up our sleeping bags, watch movies and eat popcorn on next Thursday night, to celebrate the beginning of summer vacation.
It is time to wake up the kids and get ready for the last Friday of school this school year, counting again.....
The pictures above are of the kids at May Farms, and the baby goat who tried to eat my camera, along with everything else in sight, is named Tuesday. She was born a month ago during a field trip from a Tuesday/Thursday class of pre-schoolers, May said if babies are born with a group there, then the group picks the babies name, so hence forth, the 3 year olds called her Tuesday, because ... it was Tuesday when she was born. Very cute.
May 13, 2006
Checking in over the weekend. The kids are playing at Mommer's (grandma) and Tom's right now. I am sure they are having a blast, as they always do. Times at grandparents homes bring the MLK statement to their minds..."free at last, free at last...," A typical Saturday morning brings western movies and gun fights for the boys, and playing restaurant and plenty of coloring for Sophie. I am so lucky to have such wonderful people who are part of my kids lives. About a month ago Derek had to sing a bit of a song in his Bible class to be assigned the correct part in the song Someday. There are 4 different singing parts (sorry no technical words here), for the 4 different type voices, soprano, alto, tinner (I am guessing that one), and bass. Derek was an alto. So when asked to sing a bit of a song to let the teachers hear his voice, he chose HELP by the Beatles. Did I mention that there is alot of Beatle music at Mommer's and Tom's. I asked Derek what type of songs other kids sang and he said church songs, and then he commented that most of them sang very softly, but not him, he belted it out.
Tomorrow is Mother's Day. Mother's Day last year we were still at Dallas Children's Hospital, fixing to move to the Rehab in a couple of days, although I doubt we knew that yet. The mother's day gifts I received last year, were a mood ring from Derek purchased at the gift shop which I loved because he picked it out. And Elaine gave me a carved wooden statue of a little boy holding a big gold heart, that as well came from the gift shop. I loved that big gold heart, it made me think of Jack and how enormous his heart is. Just a couple of things that he did this week that brought a couple of tears to my eyes...while driving home from church we noticed an elderly gentleman who was shoveling dirt in his front yard. Jack immediately said, "we need to help him." And didn't let it drop, Derek wanted to help to, and as it wasn't after his bedtime, I walked down their with him (work gloves and shovel ready) to see if he could help, but the man had already gone inside. Jack wouldn't rest until he knew someone had gone to help. Then a couple of days ago he noticed the dry erase marker that his teacher uses in class was drying up, he came home and searched through our craft stuff and found another marker and came out and asked me if he could take it to school for his teacher because hers wasn't working very well. When I picked him up for chemo the next day I asked him if he had remembered to give his teacher the marker, and he said, "Yes, and I told her if she needed another I could bring her more."
Stories about Jack's love of taking notice of small things and helping out when he can are almost endless. Derek and Sophie are very good at that too, but Jack notices stuff even I don't notice sometimes.
This might just be the very best Mother's Day ever for me. I am not in a hospital, my kids are all thriving, the Lord has been very, very, good to me.
Check out this website to see a Relay For Life blogged through the night. Very cool.
Blogging for Life
Happy Mother's Day
May 10, 2006
Jack had his chemotherapy today. His counts are awesome again 3480 ANC. Chemo was long, long, did I say long? Nurse Sara had a medical procedure done this week, so a different nurse did all the chemo's today. She did a great job, but when you are weighing, blood pressure-ing, blood drawing, medicine ordering, medicine giving,and charting...several kids within a short period of time things can get a bit confusing. She just took her time and made sure everything was correct, which is definately the way to go, for her and us. We arrived shortly after 10am and left shortly before 4pm. Jack watched a couple of movies and did a cool car puzzle for a while. I visited with the other moms.
When Jack was getting hooked up to his line, he had his shirt off as usual. Today there was an older woman who was getting her treatment across and over a couple of chairs from us. She was concerned that Jack was cold. She kept on asking people around her if they thought he would be cold. Then she would glance at me to make sure I heard her. After the nurse was done hooking Jack up and drawing his blood I picked up his shirt to put on him. He said he didn't want it on, I could hear the gasp from the woman, I just looked at Jack and smiled, then told him that he might cause this little lady to have a coronary if he didn't put his shirt on. She had a sigh of relief when she saw he was completely clothed again. She had 3 blankets over her and a coat on also, she was sure he was as cold as she was. Alot of the chemo meds make you feel cold, but Jack's haven't seemed to affect his body temp at all.
Right before we left a woman sat down by us and she was full of delight. She was alot of fun to visit with. She had an accent from the Dakota's and just brightened our afternoon. I told her that she was a bundle of sunshine, then tears started to well up in her eyes. I don't know if she was happy or sad that I said that, but then she quickly changed the subject. She had a cantankerous port. In order to draw her blood she would have to lay back with her feet above her head, lean her head to the side and cough or breath real heavy. The nurse told her that she had a "positional port" it mattered what position her body was in to get the blood to draw. Once Jack's port wouldn't draw and he had to raise both of his arms and breath real hard, then came the blood. Very interesting...
May 09, 2006
Field day at school today for Jack and Sophie. Jack hopped right off the ball as seen in one of the pics. I was the leader for the event, "Hippity Hoppity Relay." There was a lot of hippin' and hoppin' going on let me just say, and Jack was not the only one doing a little floppin'. There was fun to be had by all. The kids all seemed like they had a good time with it. There was the usual cutting in line, and eye rollings going on between the kids. I only had to put one little munchkin in the "penalty box" for a time out with a teacher. He and another boy had a bit of a disagreement and he pushed the boy who was on a ball so hard the boy fell off the ball and his feet went straight up in the air. Off to the box of repentance for him, although I do not think he was planning on repenting any time soon.
One of the spectacles that I take in often when I am on the elementary campus, and I am sure for years after, is the girl fights. Little girls can be just flat mean to each other. One group of little girls were arguing about who was better friends with who, and when they discuss this subject it seems like they have their arms crossed, one of their feet are pointed to the side and the opposite hip is leaning out the other way. Once the initial cat-fight, discussion, or opinion sharing was finished, then one by one the little girls would walk by who they were in a fight with and just slide in one more comment.
I can remember being one of 4 girls my age on my street. More often than not, one of the girls, myself included, was on the outs with the others. I was probably in the 3rd grade and looking out my front window and watching my friends rollerskate in a circle across the street at my friends house and they made up a rhyme about me and why they didn't like me - that day. The next day I am sure I was back in the group and someone else was on the outs.
The older I get I realize just how powerful my words are. I love the book of James. I read this book when I was coming back to the Lord and it is very black and white about what is good and bad. For some people those things are just learned growing up, many simple ideas like, wisdom, grace, mercy, forgiveness, righteousness, and taming the tongue, were not ideas I had any idea about for the most part, even though I grew up going to church on a semi-regular basis, I think our house was more survival-mode than imparting wisdom and knowledge.
In James it says:
It only takes a spark, remember, to set off a forest fire. A careless or wrongly placed word out of your mouth can do that. By our speech we can ruin the world, turn harmony to chaos, throw mud on a reputation, send the whole world up in smoke and go up in smoke with it, smoke right from the pit of hell.
James 3:5 (the Message version)
I get my toes stepped on alot in James, and I love it, this is a book which does not let you rest on your laurels....a couple of chapter headings...Trials and Temptations, Favoritism Forbidden, Faith and Deeds, Taming the Tongue, Two Kinds of Wisdom...
I can remember reading about how James mocked his brother Jesus for all of his earthly antics, for claiming he was the Savior, when it was all said and done, James repented of his sins, and went on to be a great leader in the early church. I would imagine he was speaking to himself much of the time. I generally identify with the writings of the James and Pauls, those who had a change of heart and were not satisfied with mediocrity in the following of Jesus.
We have chemo a day early this week, Wednesday, then an oncology appointment with Dr. Bowman on Thursday. I will post after chemo.
May 04, 2006
This is a picture from last summer. The kids were at Brenden's birthday party at the swim club. Jack is pre-mediport, still has all of his baby teeth, pre-chemo, he has the extra pounds he gained during the last 7 days of rehab when he could eat real food again (he gained 12 lbs in 7 days, if you have seen LOTR, he had breakfast, 2nd breakfast, morning tea, lunch, late-lunch...you get the idea). My friend Jana took this picture last year and I ran across it in email and it made me ache for summertime, the pool, the fun, and smiles.
I love this picture of Jack, he is having a blast.
We had chemo today and something was wrong with the machine that the iv gets run through and it took forever, o.k. maybe just an extra hour or two, but it seemed like forever for the chemo to get pumped through. We arrived at 12:45 and left at 5:45....
Jack's counts were fantastic - 2590 ANC.
I posted a couple of days ago about how I felt like satan was affecting my prayer life, WOW, ya'll have been praying, I have been praying, and I can just feel that the power of fear has just been ousted in a big way, the confidance and peace that I have not felt in a while during prayer are very evident again, praise God, thank you Jesus....Glory.
My favorite verse right now (I have alot of favorite verses), ...
I lift my eyes to the hills---
where does my help come from?
My help comes from the Lord,
the Maker of heaven and earth.
He will not let your foot slip---
he who watches over you will not slumber,
indeed, he who watches over Israel
will neither slumber nor sleep
The Lord watches over you---
the Lord is your shade at your right hand.
Right now when Jack and I walk together I hold his hand. He loves to be cuddled and held, so he does not mind me holding onto him. I hold his hand because he stumbles alot. The chemo that he is getting causes some muscle drop in his feet, and he just doesn't have control over his feet like he used to. When I am holding onto his hand and he falls, he doesn't fall hard, it is a soft fall, controlled because he is holding onto me, just as firmly as I hold onto him. I am so glad to be by his side when he stumbles because I am right there to soften the fall, and help him up. Like I am there for Jack, I know that God is holding my hand, and he is there to make my falls easier. As much as it warms my heart and makes me gush motherly emotions inside when I can help Jack, God is even more there for me when I fall. I am completely confidant that God will lift me, hold me, and guide me, and most of all love me, for all the days of my life. Thank you God for your mercy.
May 02, 2006
Wednesday Night (5/3) 10 pm news on the CBS News Affiliate KTAB watch for Jack's story as part of the Medical Miracles series during the month of May
This is the conversation that has been going on in my head for the last 9 months.
Picture me praying, wherever I am at the time, at church, at home, in my car, sitting next to Jack at chemo, in a doctors office, next to the MRI machine with Jack inside.....
Good Angel - Bad Angel Dialogue
Good Angel - played by the Holy Spirit
Bad Angel - played by the Devil
Good Angel - Pray!
Bad Angel - Don't waste your time!
Good Angel - God says to bring all your concerns to Him in prayer...
Bad Angel - You can pray about it, but nothing will change...God has already decided.
Good Angel - God loves you, pray to Him, God loves Jack more than you do, God says to keep praying.
Bad Angel - Didn't you hear what I just said...praying specifically for Jack to be healed is a waste of time, you are going to set yourself up for a big fall if you pray for something that does not happen. Just pray a prayer that wont get your feelings engaged. Don't hope for something that might not happen. Your heart can't take being broken into a million pieces, so keep your expectations low. Don't trust God with your heart in prayer.
Good Angel - Keep trusting God, ask for God to bless your family, ask God to give Jack complete health, pray bold words, pray for God to transform your heart and lay your feelings bare and open your tender heart to God.
Bad Angel - The last time you did that, Jack's tumors grew, he has to have that poison pumped into his veins every week, you know God could have prevented that...your prayers don't matter, a bunch of other people are praying for Jack to be healed you don't need to pray, the Holy Spirit interceeds your prayers - so it really doesn't matter what words you use.
Tammy's Prayer of Fear
Then this is the prayer that I have uttered hundreds of times since I started listening to the bad angel....Father God, thank you for the blessings of each day. Thank you for my family, thank you for Jesus.....Father I pray Your will be done in our lives, if it is Your will that Jack is healed Your will be done, please give our family what we need to have your glory be seen in our lives through it all.....
In Jesus name,
Is that a bad prayer? I would say no, if it wasn't prayed by someone who was afraid to ask for more, or afraid to put her feelings into God's hands.
"Do not be anxious about anything, but in everything, by prayer
and petition, with thanksgiving, present your requests to God."
For much of the last year I have been very confused in prayer. I have let satan wedge his way in through a door that was just cracked enough because of my fear. That hateful, evil roaring lion who roams around waiting for an opportune time to pounce can spread seeds of doubt and fear to take over a heart who claims the Lord as their King.
Micah 7:8 says
Do not gloat over me, my enemy! Though I have fallen, I will rise, though I sit in darkness the Lord will be my light.
So for months I have been called by the Holy Spirit to not let fear of what might happen in the future with Jack affect my trust in God. God has called me to a prayer life that is unlike anything I know right now. I only can utter the same words that were said by the disciples, Lord, teach me to pray. (Luke 11:1)
From: "The Celebrations of Discipline," by Richard Foster
In our efforts to pray it is easy for us to be defeated right at the outset because we have been taught that everything in the universe is already set, and so things cannot be changed. And if things cannot be changed, why pray? We may gloomily feel this way, but the Bible does not teach that. The Bible pray-ers prayed as if their prayers could and would make an objective difference. The apostle Paul gladly announces that we are "co-laborers with God"; that is, we are working with God to determine the outcome of events (1 Cor. 3:9) It is stoicism that demands a closed universe not the Bible.
From: "With Christ In The School Of Prayer," by Andrew Murray
May a deep sense of my ignorance, of the wonderful privilege and power of prayer, of the need of the Holy Spirit as the Spirit of prayer lead me to cast away my thoughts of what I think I know and make me kneel before Thee in true teachableness and poverty of spirit. And fill me, Lord, with the confidence that with such a teacher as Thou art I shall learn to pray......And when I may not know, Thou wilt teach me to be strong in faith, giving glory to God....Amen.
I am confidant that upon my confession of allowing fear to guide my prayer life that God will through His grace and mercy, teach me to pray, through the power of His Holy Spirit, the example of Jesus' prayers in the Bible, and also the gifted writers like Mr. Foster and Mr. Murray.
Be bold in your prayers for Jack and for me too.