Tuesday, June 30, 2009

Emotions run deep and fast

Man what a day!

Zach site was red this morning so of course I think the worst and think it was infected. Call the Dr who say call the local Dr off we go to clinic. I know all during this if it is infected we head straight to cooks. do not pass go do not collect the $200.....Thankfully it was just skin irritation! so John and I got to have our date tonight!!

We had Gigi and paw-pee(John parents) stay and we saw transformers and had dinner! I laughed and laughed until I was literally crying on the way home. I think my emotions just can not be controlled right now. I want to try to be happy but want to be sad too....So hard to explain.

I am terrified of how Zach's little body is going to handle radiation and Chemo at the same time. plus I will be what seems like 10 million miles away trying to work. Granted I can go at any point he gets really sick but still. What mom wants to be 2 hrs away if her husband calls up and says get here quick?!

As you can tell as Sunday draws closer for the time for John, Zach, Aaron, and I to all be apart I am starting to fall apart! I am fine as long as John and I are together-but apart? Well lets just say in 9 yrs of being a couple it has happened only a few time and I call him hourly...I am betting I will be on speaker phone and web phone alot for the next 6 weeks!

God put us together this way for a reason. Now He has seen fit that we need to be apart for awhile. Please pray He gives us both the strength to get through this. Please pray I can work and actually do the job I need to do with my sick child and husband in Ft Worth. Pray for wisdom on handling both boys separately but keeping with our family core values. Pray extra hard I am able to wipe stinky bottoms of one 4yr old and potty training keeps going well with a momma that still puke at the smell of poop!! (YES I know I am hopeless!) Just keep praying us though folks!

We do need alot of help to get through the next 6 weeks. if you would like to give john a break during the day or night I know he would think it is great! please call me to set it up starting next week. I will mark it on a master calender. anyone is able but no kids allowed and no one exposed to chicken pox or any other illnesses. Food is also welcome! call us for that set up too! I need lots of visitors in wf as well to help me make it through the long lonely night!

My work number is 940-322-2800 (M-F) and you can leave a message if I am not there.

I will try to post more later this week.
Blessings,
Jennifer

Monday, June 29, 2009

The chosen mothers

The Chosen Mothers
by Erma bombeck
Most women become a mother by chance,
some by choice and a few by habit. Did you ever wonder
how mother’s of children with life
threatening illnesses are chosen?
Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and
deliberation. As He observes, He instructs His angels
to make notes in a giant ledger…….
‘Armstrong, Beth, son, patron saint Matthew’
Forrest, Marjorie, daughter, patron saint Cecilia’
Rutledge, Carrie, twins, partron saint Gerard.’
Finally, He passes a name to an angel and says, ‘Give
her a child with cancer.’ The angel is curious. ‘Why this
one, God? She’s so happy.’
‘Exactly,’ smiles God, ‘Could I give a child with cancer
a mother who does not know laughter?
That would be cruel.’
‘But, does she have patience?’ asks the angel,
‘I don’t want her to have too much patience
or she will drown
in a sea of self-pity and despair.
Once the shock and resentment
wears off, she will handle it.’
‘I watched her today,’ said God.
‘She has that feeling of self-independence
that is so rare and necessary in a mother.
You see, the child I’m going to
give her has it’s own world.
She has to make it live in her world
and that’s not going to be easy.’
‘But Lord, I don’t think she believes in you,’
said the angel.’No matter, I can fix that.
This one is perfect.
She has just enough selfishness.’
The angel gasps, ‘Selfishness? Is that a virtue?’
God nods. ‘If she can’t separate herself from the child
occasionally, she’ll never survive.
Yes, here is the woman
I will bless with a child less
than perfect.
She doesn’t realize it yet, but she is to be envied.
She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see….ignorance, cruelty, prejudice….
and allow her to rise above them.’
‘And what about her patron saint’ asks the angel,
his pen poised in mid-air.
God smiles and says…’A mirror will suffice.’

Being home

We are all home right now. For 5 glorious days and 4 wonderful nights, we are home! Everyone sleeps better in their own bed. Zach eats and drinks a tad better at home. Aaron makes me laugh out loud...alot!:) We love being home.

But I miss the security of the hospital room. I miss the isolation and clean feeling of cooks. I miss the nurses checking on him every so often. I miss my new friends. Not enough that I want to go back today, but enough that I am glad when we go back on Friday.

We pediatric cancer families are a rare breed. We have a love/hate relationship with our oncology team. I am finding a whole world out there I knew nothing about 30 days ago. I am finding a strength in myself and John I did not know we had 30 days ago. I even found out how blessed I can be by God in the hard times that I did not know 30 days ago.

If you ask me today would I change the last 30 day? No-this is the journey for us to handle. Would I wish for what cancer has taught us? heck yeah! I am a growing fool right now. Do I wish I could take away my child's pain? Always-but I also know he will be a better person because of this as well.

I wonder were the next 30 days will take us?
Blessings!
Jennifer

Friday, June 26, 2009

Angels watchen over me!

Sitting in Zach room here on 3 south at cooks and listen to our wonderful Praise Baby music(thanks aunt Katie!) praising my great God! Met a wonderful mom of a Downs kid on the floor that found out on 6/18 he has leukemia as well! And she to was praising God and feeling blessed to be here on 3 south!

God has such a mighty work planned for our lives. Sometimes it take a large earthquake such as cancer to wake us up to see it. Maybe He will only send you a small quake, maybe it will only be a whisper by His small still voice. But all that matters is we listen!

God take each emotion and each feeling we have in this time to bring us closer to Him. He has taken my heart and filled it with His joy and peace and lest me know he is lifting a carrying this burden for us and with us! He is a big big God! No problem is to big or small.

So give it to him folks! do not fight each battle alone! Share your burden with other, lift up your prayer to Him and He will lighten your load! Take each step, each day by Faith!

Blessing from us to you!
Jennifer, John, Aaron, & Zach

Thursday, June 25, 2009

Hope devo for today!

I know everyone loves these so i had to share today's! We read it together as a family before we came to cooks today. It was titled "A Father gives good gifts" and was on page 20 in our 1 yr book of Hope!

You parents- If your children ask for a loaf of bread, do you give them stone instead? or if they ask for a fish, do you give them a snake? of course not! If you sinful people know how to give good gifts to your children, how much more will your heavenly Father give good gifts to those who ask Him? Matthew 7: 9-11

Recently there was a prayer service for someone I know who is fighting a vicious cancer. How I would love to see God work a miracle and rid her body of the disease that is slowly robbing her of life! I love her family and her, and because I know firsthand how awful and painful it is to watch someone you love die, I do not want them to have to endure it.

Surely we can ask God for what we want. We can freely tell Him what we want is for those we love to be healed. We want a job. We want our marriages to be restored. We know he's our heavenly Father and desires to give good gifts to those who ask him. The problem is we are so limited in our understanding , we do not always know what is good!

I want to give my son, Matt, good things. But that is not always what he ask for. He wants chocolate coco pebbles, and I give him shredded wheat. I know, better then he what he needs. He wants new basketball shoes and I want him to learn to be content with what he has. I have his long term best interest in mind. I try to shape his body and his mind and his character, so I do not always give him what he ask for.

And I recognize that as much as I might want God to give me what I ask for , I trust that my heavenly Father knows what is best. Sometimes his "good gifts"do not appear that way to my limited perspective. He gives me broccoli when I ask for ice cream. Sometimes he uses frustrating circumstances, unwarranted criticism, or disappointing delays to develop in me the good gifts of patience and humility. He calls me to trust Him, to know that he is my wise and loving Father, and my ultimate good is His heart's greatest desire.

Would you be willing to stop pounding on Heaven's door, to stop begging for God to give you want you believe is best, and to open your hands to receive the good gifts your heavenly Father wants to give to you?

Heavenly Father, I know you are committed to making me holy, more than just happy or healthy. Open my eyes to my greatest need-more of you! Open my heart and hands to receive the good gifts you want to give me.

ok people can you see how we used that in our lives right now! John and I were blown away by that today!
I actually copied the page in whole today! continue to pray for healing! We know are God if powerful but he also know he has a perfect plan for us and Zach!

Blessings!
Jennifer & John

Wednesday, June 24, 2009

Cancer can be BORING!

or repetitive....take your pick. I swear today was nothing but more scans for our scans we did before and more chemo. Zach even found it boring and slept 1/2 the morning away. OK not really he just had really great drugs! but you get my point! It was very routine and we stood around and waited alot. We were at cooks from 7:30 am to 3pm to be seen for a total of maybe 2 hrs!

On a different note-Zach is losing his hair! :( We all knew it was coming but still....So be prepared people! I too cried when I 1st saw it. make it more real.

Met a new rhabo mom and child today. Her baby is still a baby! He was born in 2/09 and found out in 3/09 he had cancer! can you imagine?! broke my heart.

anyway..need to go to bed. Surgery tomorrow at 1pm!
Blessings
Jennifer

Tuesday, June 23, 2009

Next round

we have another cat-scan in 2 day and chemo as well. plus we have surgery Thursday afternoon to get a g-button(feeding tube but in the stomach) so it will be a long couple of days at cooks for us.

We have decided John and Zach will live with my sister in Flower Mound for the next 7 weeks and I will be there whenever I can. John and Zach will also try to come home on weekend. it is a 30 to 40 minute drive without heavy traffic(IE 10am or 10pm) so we are hoping for the best! but we feel it is the most comfortable for John and Zach. So pray all parties (including sweet Julie and Joe!) make it through the summer!!

We are now the proud owners of a laptop as well! this way John has a computer and so will I to post when we are stuck at cook for long hrs at a time!

Thank for all the prayers!! We love to here about it!!
Blessings!
Jennifer

Saturday, June 20, 2009

Our Father in Heaven

I am reading a great book right now. The One Year Book of Hope by Nancy Guthrie. God provide even the reading material during this time!

Anyway today lesson/devo was very practical and timely for me(actually they are most days right now!) Matthew 6:8-10 Your Father know exactly what you need before you even ask Him! Pray like this: Our Father in heaven, may Your name be honored. May Your kingdom come soon. May Your will be done here on earth, just as it is in heaven.

He know exactly what I or Zach need before we ask, but he asks me to pray anyway! He even shows me how to pray! so why pray? why ask if he already knows the answer?

Because by placing myself in God's family and under his authority, welcoming His work and His ways, always giving yourself to serve Him completely-these are not just meaningless phrases or preambles to our list of request. When we pray the way Jesus prescribes, they are on the top of our list! Getting God's priorities into proper perspective changes out own! ( I am coping pg 18 here)

man how deep it that!! it's not my priorities it's God! not my will but His. I know what my will wants. I want my son to be cured, to be healed. But what is God's Priority? Maybe it's for me to just ministry to other in this storm. to minister to my friends and family. to my husband and older child. Only God knows the outcome right now of this journey! But do not forget He does control it all!! He know what the good and perfect outcome of this will be. It may not be my perfect outcome. But it will be his!

So Pray how you will folks, But as for me and my house, We serve the one true God most high and We pray his will be done....
Blessings!
Jennifer

Home but not home

Well we only had Zach in his own bed at home for 1 night before we landed back in the er in Wichita Falls for fevers. Thursday morning we had taken it and it was low and Thursday night when we got home from my mother it was up again. So we held off on his loratab which has Tylenol in it to see how high his temp would climb. It hit 101.5 pretty quick.

We called the on-call oncologist knowing he would send us to the local er-he did, knowing we would be admitted to United regional(local hospital) and we were.

I was up all night last night getting Zach in a room and then just not really being able to sleep after 3am. so needless to say I slept all day!

So here I am up again late at night blogging away as Zach sleeps in his room here on peds.

Do I still fill blessed to be a mom of a child with cancer? YES! I am a walking testimony for my Savior and His grace and peace. I love people faces when I save my life is easy and very peace filled right now! I can not wait to see where God takes us for the next year!

I love that we are home and in the hospital because we are getting alot more rest just being in our bed and not the hospital room. We can relax at home and see family more. Life as a cancer mom if good:)

Blessings!!
Jennifer

Thursday, June 18, 2009

New title

I changed the blog name. I thought about how much this will consume our lives the next year and decided it fit better. Little did I know last year when I started this how much I would want to journal daily right now! I love typing out my thoughts when I can.

Two things I get asked most often right now:
1-how are you, john, or in general everyone? We are as fine as can be expected. We no longer plan even days in advance. we plan hr to hr. We live in the moment. We live that moment for all it is worth and we pray. ALOT!

2-What do you need? prayer!! but if you feel you have to do something We will still always need our house cleaned, our yard mowed, groceries bought. The daily chores we think we will always have time for there is never time for now. I never thought about how much time it actually takes to plan for every day life things. So if you have a specialty ( re laundry, cooking, whatever) you love to do just let me know and tell me what and when you can do it. I honestly can not tell you when it will need to be done right now. my brain no longer works:) I don't plan anymore.

So knowJohn is at home and all he does is take care of himself and Zach. I take care and Aaron and I. Wounderful friends did a great job on our house before we came home! My dad is mowing my lawn today:) We continued to be blessed! God called us to this journey and we are riding it our with Him guiding us faithfully!
Blessings!
Jennfier

Wednesday, June 17, 2009

They are Home!!

John and Zach got home from ft worth about 8pm today! It seriously took all day to leave that place! everyone under 5 is already asleep in their own bed! about 1/3 of the stuff we took and came home with is put up already!

Friday we have an appt. with our local ped. for a blood count draw. Pray it is good and Zach might get to go to church with us for a little while on Sunday! Might be the last time for awhile so I want good numbers! No Whammies!

John and I have to take Zach back next Thursday for chemo and this G-Tube placement in his stomach(G-button actualy). That will be another 2 day minium stay, but hopefully we get a whole week at home for the next week! PRAISE THE LORD!

I am a blessed mom to have everyone home and to be here on this journey!
Keep praying!
Jennifer

Tuesday, June 16, 2009

I want them home

I miss my family. I want us all home together, for at least the next few weeks. I miss actually sleeping in the same bed as my husband. I want to lay around all day Saturday and do nothing together. I miss what was, but I also want what might be.

Please pray them home with me. Aaron and I are only 1/2 of the whole. We need our other 1/2 here with us.

That is all I can say...
I just need them here.
Jennfier

Saturday, June 13, 2009

Thankfulness part 2

I got long winded last night. I also wanted everyone to know what transpired in April and May to get us here as well.


I had been working with our Sunday school class on the faith mission dinner we do every Saturday. I was asked to apply for the Jr. league. John and I were planning a cruise in September to Alaska. We were even starting to plan our summer activities. Life was going as we planned. We are also building up alot of debt and frustration.


I had the incident in April with the mission that lead me not to apply for Jr league. When we booked the cruise we did it through Norwegian directly making it changeable at any point up until June 30. Nothing we as a family had planned was not able to be cancelled easily!


In May we also went to a wise woman and got on a strict budget to pay down our debt and set aside a good amount per month for medical bills! God knew we would not need money to be a stress in just one month!


God new even 12 months ago what we would need. He knew we would have 6 weeks of radiation in July and August. He knew we would not even be home for 3 weeks in June!

Even in this storm God is always faithful. We are so thankful for how God has protected us!


Jennifer

Friday, June 12, 2009

Thankfulness

I am so grateful to God for prepare me for this my whole life. Most people do not know i have done this before. No not a child with cancer, but cancer none the less.

My grandmother had lung cancer when I was 18 and I helped care for and lived with her her last yr. I mainly just slept there and kept her comfortable. but-The stress was so thick. I learned to cope then too. I drank. I drank alot.

I was barley 18, not living at home, and would be in charge all week and the "good girl" finishing high school, and then the weekend would come. I drank. not the normal girly 18 stuff. I went straight to 6 packs and hard liquor. I had no boundaries. I thought I was just having fun.
.
Then one day someone asked if I was ok. not even if i was happy. Was I ok? No I could honestly say I was not Ok. So I got help. I mourned the life I lost those 3 yrs. I mourned not growing up slowly. I mourned my grandmother.

I Healed.

I learned how to cope correctly. I learned to Praise my God in the Storms. I learned to be ok by myself. I learned to love myself. I learned I was ok by myself. Just me and God. I learned to honor my parent as an adult but how to set boundaries in my job and my life. I learned how to cope correctly. I learned how to be me, but better.

I found my soulmate, I marries him, we had 2 beautiful boys, and God showed me again and again to only do so much for Him. have boundaries.

I said no to alot of things the last 6 months. I listen to God speak and time and time again he was clear. do these 2 things, no more. Faith mission and Choir. I did not plan. I did not guess what the future held. I just felt as if we were waiting.

Now I know why. He knew what the future held. He knew we were in for a fight. He knew I would and my husband would devote 24hrs a day 7 days a week to this fight for the next year!

He even provided means of support I fought against with every breath at 21! He provided it down to each need. Each request if met before we can send it out!

PRAISE GOD! MY ANCHOR HOLD ME IN THIS STORM!
jennifer

Thursday, June 11, 2009

Anti-climatic

The nurse was right. It has been very anti-climatic getting chemo. They even give him drug to keep him from getting sick! so we have not even had a lick of puke!

I worried alot last night thought and wondered how he was. I slept on the RMH(Ronald Mcdonald House) and it was storming alot so every time I work up I worried about Zach. John said he slept but was moaning and whiney. That is prety par for right now. His tummy is HUGE!! Hopefully the chemo will work on that ASAP!

I am really ready to get home. I miss my bed and Aaron. I also miss sleeping with John...I miss his snoring! :)

I am ready to get on with life with cancer. I am ready to fight this thing and kill it! I am ready for my little boy to be better and to say I am ready to have life after cancer.

For now-I pray for healing, peace, and rest. I pray for a new normal to come quickly. for routine to show up when we least expect it. for life to go on.
Jennfier

Wednesday, June 10, 2009

Chemo

We start chemo today. actually in the next like 15 min. the nurse said it will be very anti-climatic. we keep being told kids handle it so well. We are at cooks for at least the next 48hrs. or until his blood work start back up instead of down.

I wish I could do this fight for him. I wish it was me. but-I do not wish this on another mom , dad, or child.

I vpray for stregth for him & our family. God has been at work our whole lives preparing us for this. Especially the last few months. He is an great big God and has great big plans for our family.

We are on our knees to not only pray but worship Him for His awe and Glory.

Jennifer

Cancer

Rhabdomyosarcoma. even the name strikes fear. When Dr.Sultemeier walked in the room last week i knew. I knew the minute i saw his face it was cancer. and now it has a name. Rhabdomyosarcoma.

This thing that has been growing in my child for the Lord only knows how long. The thing that may or may not kill him. This thing that will take at least 42 weeks of chemo and 4 weeks of radiation to fight. Lord it scares me. It terrifies me!

We found out today it is group III Stage 3 intermediate risk group. All that to say he gets standard protocol. and what does that mean? Standard? that he had a 50 to 60% survival rate if he make it to 5 years in remission. If it reoccurs.....

Well lets just say i am not sure I would put him through it again if it come back.

God has given me such a peace all this last week getting to this point. And i know God will give me a new peace in the morning. tonight I need and want to morn the loss of the life i thought we might have as a family. The idea of what might have been for the next 12 months.

I look to Him how gives me strength to get though the next minute, the next hour, and the next day, until we make it to next year. until we are cured.

Jennifer, John, Aaron, and Zach

Tuesday, June 2, 2009

Pray for Zach

We fould out today he has a 15cm mass in his belly. we know not much more then that. we will know more in the next 72 hr. i will post when i can. we hope to have a lap top tomarrow. it also may be family posting for us. just pray for wisdon and grace. pray for all of us. no parent or grandparnet want to go thourgh this. yes it might be cancer but we do not know. please to not call us. we can not handle it right now! post here and we will update here.
thank you!
jennifer, john, aaron and zach