April 27, 2006
Today there was a triple celebration at chemo. We celebrated 2 birthday's Derek's and Alejandra and had a farewell to Grace (in the picture with her mom who is 4 1/2 weeks away from her delivery due date) and her family as they have been transferred to a different Air Force Base in San Antonio. We had a cookout, Nurse Sara's husband brought their grill and we had grilled hot dogs, chips and cupcakes to celebrate. The pictures of the grill are what you can see when you are sitting in the chemo chairs and looking out the window. It is beautiful and serene to watch the green grass, trees and they have bird feeders everywhere that attract the most beautiful cardinals and blue birds ever seen. A good time was had by all.
Grace is 3 years old and she is a shining beacon wherever she goes. She is extremely friendly and so much fun to be around. When she and her mom and dad left today for the last time there was such a feeling of sadness in the air. Everyone was sad to see them go, Victoria (Grace's mom) has been so much fun to spend time with each week, I will miss her so much. With tears I wish them well. So long little Gracie.
Jack's counts were 1800 ANC, so his 2 week break did him well.
Today we started our 7th phase, 4 weeks on then 2 weeks off, then 8th phase and that is it, 4 weeks on 2 weeks off. We have 12 more weeks total with breaks and chemo weeks all together. Wow.
Enjoy the pictures of these sweet chemo kids, they make my day so bright, and they also make my heart ache because of their illnesses. They are all smiling, how awesome is that?!!!
April 26, 2006
Quick post to let anyone who might have trouble seeing the new video of Jack - you can download at quicktime.com and get the latest free download and you should be able to see the video. Apparently some have an older version and it is not showing any of the pictures.
Secondly - a big hello and congratulations to my sister Becky and her husband, Dallas, who found out yesterday they are expecting twins. Good luck sis, you will be a great multiple mommy.
We have chemo tomorrow so I will be checking in with ya'll to let you know how that goes.
We are about 6 weeks away from Jack's Disneyworld Make A Wish Trip and starting to plan. I would love any info from ya'll who have visited before on your favorite places to go. I have a couple of books that Beth G. (another multiple mommy) gave us and have ordered another guide to Disney, so I am covered literature wise but would love to know about your experiences. Post away.
April 25, 2006
Tammy has such a wonderful, honest way of expressing her thoughts & faith, & I am so thankful for this blog! Today is April 25th, it was 1 year ago that we received the news of Jack's brain tumor. Those dreaded 2 words that one never thinks you would hear, but realize immediately that it will change our lives forever. Well, as you all know, we've had many ups & downs, many tears of joy & sadness. But one thing has remained constant through this past year-the strong faith & trust in God was so evident! It makes me so very proud to be the Mom/Mother-in-law of Rob & Tammy, who still hold tighter to the hand of Jesus when their hearts are breaking. They continue to serve our God & be faithful witnesses of His love & grace in times of need. I am so blessed to have our very brave little Jack & ever kind-hearted Derek & Sophie, the "always there when you need them" Tamara, Daryl, Lauren & Zach, my unselfish new husband Tom, & all the never-ending prayers & support of all you wonderful friends! We do not know what God has planned for our future, but I know we will continue to repeat the praises of Psa 18...The Lord is my rock, my fortress; my deliverer; my God is my rock, in whom I take refuge. He is my shield & the horn of my salvation, my stronghold. I call to the Lord, who is worthy of praise! God bless you all, Elaine
Elaine we are so grateful for your constant dedication to support all of us with your elegant strength, your firm faith, your undying devotion. From the day each one of our kids has been born you have been a part of their lives, you are a gift. You are a gift from God to me as my best friend, a confidant, counselor, and supporter. You affirm Rob and I in all you do and say to us.
Thank you for being the voice on the blog today.
April 21, 2006
Big day on the blog!
Notice on the side bar that there is a slideshow/movie A Year With Jack. You can click on the small or medium as of the time I am posting this and you can see a progressive slideshow of Jack that starts about 2 weeks before his diagnosis last year and goes to his 7th birthday this year. Thanks to George and Kristen for making this video posting a reality to me, and to Greg Kendall-Ball who emailed me through some of the beginning stages of how to get this on the blog. I wish I could be more computer literate, but thanks to people who help me along the way I am learning more every day.
In the slideshow are some of the childlife workers, tech's, and the woman crouching down next to him in his wheelchair is his neurosurgeon, Dr. Price. The children at the rehab were some of Jack's friends who were patients along with Jack.
I still am thankful for the blue cross that you will see in the slideshow. When we were still at Children's Hospital, I think it was the day of the surgery, maybe the next day, I was taking a bit of a break from the hospital room and was looking in the gift shop. I remember feeling like Jack was broken, I know that sounds weird and wrong, but I was so afraid that he was going to die, when I saw this cross I broke down in tears in the gift shop. When I read those words I realized that brain tumor and all Jack was perfect. He was wonderfully made. Robin and Guy Saylor bought us that cross from the gift shop and had it delivered to Jack's room after I talked about how much those words calmed my spirit, gave me hope. The blue cross is hanging in Jack and Derek's room and it means just as much today as it did a year ago.
Every pictures tells a story, and reminds me just how much has happened this last year. Every moment has been blessed by God. The song below touches my heart and brings tears every time I hear it. This song is by Casting Crowns, I bought the CD a couple of days ago and I was reading the liner notes and they talk about the words of that song being inspired by a mother who was honoring God through her walk as she nurtured her daughter with a deadly illness. Well that makes me cry even more. I so want to honor God in this storm.
Praise You In This Storm
I was sure by now
That You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen"
and it's still raining
As the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God
Who gives and takes away
I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
I remember when
I stumbled in the wind
You heard my cry You raised me up again
My strength is almost gone
How can I carry on
If I can't find You
As the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God
Who gives and takes away
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
April 19, 2006
Wednesday morning and the kids are at school. As of yesterday the 3 children have completed the last of their standardized tests for the year. So glad about that, the kids are too!
Jack is completely procedure free this week. I reminded him this morning that he would not have to leave school at all tomorrow, he was very happy about that. Next Thursday the 27th we will start back up on the chemo.
We are less than a week away from our "anniversary" date, one year ago as of April 25, we stood in the doctors office not believing what we were hearing. I pulled out a recap of the last year from the blog....
April 25, 2005
Leave it to me (Sarah) to start an entire blog when I have virtually nothing to write! I have created this blog to be a place to keep church family updated, as well as allow your comments to Rob, Tammy, Jack, Sophie, and DJ to let them know how much we love them and are praying for them. (Thank you Sarah)
April 27, 2005
Jack and Dr. Price are not quite yet out of surgery, but Dr. Price is closing his precious little head up. The nurse reported to Tammy that all seemed to go well.
The tumor appears to be non-malignant. There was a slight disappointment in that there were 4 small pieces of the tumor that Dr. Price was not able to get to because they were attached to the brain stem and "Jack was not tolerating her getting to them". The implications for those 4 pieces can be anything from no further problems and ignore them to needing to treat them as if they were a cancerous tumor. It will all depend on Jack's recovery for weeks and months to come. Jack will be going back to that hospital on a regular basis for a while to be monitored for that.
May 3, 2005
The brain tube is out. We just took Jack for his first wheelchair ride to the front lobby which has a huge train display. He had just been in the treatment room, getting the drain out of his sweet little head. We had 30 minutes before the nurse said he needed to be hooked back up to the feeding tube, so the neuro nurse practitioner, one of Jack's favorite people here, said get this boy off this floor and take him to see the trains. So bloody hair and all we took him down to the lobby. He liked the wheelchair ride, a bit groggy from the morphine due to the procedure, but he liked it we could tell. He will enjoy going back tomorrow. Now that he is not being monitored for brain pressure we can move him around a bit more, and tomorrow the pt will come and help us get him walking.
The neuro nurse practitioner also said that the rep. from the children's rehab facility here in Dallas would be by to speak to us tomorrow. They will evaluate Jack and decide if he can do outpatient therapy for speech or if inpatient therapy would be best. The hospital will keep us here only until Jack's feeding tube can be taken out, when he can eat. Could be another day or two, then we would either come home, or Rob and Elaine would take Jack and I to the rehab where we would live for up to 6 weeks.
This was not easy news for me to hear. As I would love to come home and hug my kids necks, and pick them up from school when they are sick, and help them shop for teacher appreciation gifts...I ofcourse want what is the very best for Jack so it could be a while until we get home. Keep your posts coming.
May 10, 2005 Move to In Patient Rehab Center
(written by Rob) We got moved over to Baylor this morning. It seemed like a very nice place, very different than what we have been used to however. One of the ways God has been taking care of us is that the patient load at the hospital was very low the entire time we were there so we never felt like Jack was being neglected. This place is FULL. Not that I think Jack is going to be neglected, but a very different atmosphere and energy when there is SO much going on.
May 18, 2005
Jack is talking, Jack is swallowing, Jack is happy and smiling!
His therapy went great, he was swallowing saliva on his own. I was so excited we called daddy to tell him, and Jack started talking to Daddy on the phone!
Then we called Mommer (grandma) and when Elaine answered the phone Jack said, "Hi Mommer this is Jack!"
May 25, 2005
It's Party Time!
As things stand now, Jack's party is planned for Tuesday evening in the fellowship hall at Southern Hills Church of Christ. It is come-and-go from 6:30-8:00. Hope everyone can make it and hug Jack, Tammy, Rob, Sophie, and DJ and tell each of them what a precious light of Christ they each have been -- and that we are SOOOOO glad they are all home!
July 21, 2005
So we do have to go, "there."
My last post I wrote the options about what could happen to Jack's tumor. I didn't even let my mind go "there" but now we have arrived to "that" place.
Jack's mri was yesterday, today was clinic. Our neurosurgeon, Dr. Price, along with an oncologist, Dr. Bowers, came in to tell me that Jack's fragments of tumors left from the surgery are growing at a very fast rate. There was a grouping of abnormal cells (next to the tumor that was for the most part removed back in April), that grouping of cells has turned into a tumor also. So we are looking at starting chemotherapy in the next 2 weeks.
August 2, 2005
Eye Surgery - Check
Port Surgery - Check
We got home an hour or so ago from Fort Worth after the completion of 2 successful procedures. (Jack started chemo a couple of days after this)
January 10 2006
The visit with Dr. Bowers, Jack's oncologist, went great! He said the tumors have shrunk even more and now they are not even a mass of bulk, but considered more of a plaque, a thin layer of tumor.
April 4, 2006
When Dr. Bowers called us back in for the results after he had received them he said that there had been no change in the tumor size. It has stayed the same over this last course of treatment. So the plan is to continue with chemo and see what happens.
April 13, 2006
I asked Dr. Bowman if he could in his experience forecast into the next 2-3 years and tell us what this will look like, he said that he would guess we would have already done radiation by that point.
Emotions have been all over the map this last year. Thanks be to God for lifting our chins to Him throughout it all. I am blessed to be Jack, Sophie and Derek's mom, and especially blessed by my husband Rob. Jack has inspired those of us close to him, and those far away. His smile is contagious and evokes joy in all who see it. Thank you God for blessing us with Jack.
April 13, 2006
Thursday afternoon and Jack is back at school. I picked him up for his 11:30a.m. appt. with Dr. Bowman his oncologist from Cook's Hospital. We got to see some friends in the waiting room. Jack had woken up early to make his own lunch today which he ate in the waiting room of the doctors office. He had a very dry looking peanut butter and grape jelly sandwich and a cup of key lime yoplait yogurt. He enjoyed every bite. He also asked me this morning if he could take a dollar from his bank to get a soda for his drink from the lobby area at the dr.'s office.
When we got in the building he marched straight over to a bench, laid down his lunch box, opened it up, reached in for his dollar bill and very proudly walked over to the soda machine and made his selection. He makes me smile.
When we got into a room the Dr. said that Jack didn't need to get a poke today, to just let him have a 2 week break from blood draws completely. Jack was thrilled about that, I would have liked to know what his counts were this week, but am so glad that he gets his first week in one year without a needle stick!
Dr. Bowman came over to us and pulled up a chair to dialogue about Jack's results last week. I didn't have any time last week to discuss it with Dr. Bowers, so I was glad that Dr. Bowman broached the subject. Summarizing the next 10 minutes with him I will tell you what we talked about. He said that the next visit to Dallas and the next MRI is going to be pivotal in Jack's treatment. At that time we will be deciding where to go next with this. I asked him if Jack would be put on the next line of chemo drugs immediately when we finish this protocol or if we just would wait until it started to grow. He said with most low-grade glioma tumor's you can just wait and see, unfortunately Jack's tumor was so aggressive, it doesn't always "act" like a typical low grade glioma. Alot of times if this type of aggressive tumor is allowed time to grow back it can mutate and become resistant to any form of treatment. It can also go the other way, the chemo could have mutated it already and it might not be as aggressive anymore, in that case future treatment would still be needed, it just might not be as resistant to the medication. Then he asked if we had talked about radiation therapy. I did not on this last visit but knew from our time earlier last year that it would be a possibility if the 2 chemo protocols didn't work. He said that is true, I asked him if the gamma knife radiation would work for Jack, gamma knife is supposidly a newer form of radiation which is much larger doses of radiation but much more pinpointed, it wouldn't affect the other areas of the brain as much. He is going to check with Dr. Bowers and some other radiologists he works with to see if this might be a good option for Jack. There are a host of issues with radiation that totally freaked me out today talking with him.
I did ask him if he could in his experience forecast into the next 2-3 years and tell us what this will look like, he said that he would guess we would have already done radiation by that point.
All of this information is beneficial, and when we go back in 3 months it will help us to be informed and be thinking about our options.
I am praying that God's blessing will be on Jack and our family during this next 3 months, and after, for peace, and that God will shine his light clearly on this situation.
This next sentence sounds morbid, I am sorry for that, but I have seen parents who have lost their children to cancer, and some that are going through it right now, with hospice as their child's caregiver, and I look at Jack and I can not imagine my life without him. My prayer and pleading to God is that he blesses me with 3 healthy children whom I can see grow up and see thriving in their adulthood. I am sure that these parents I have spoke of have prayed that same prayer too.
I have yearnings for my life on earth, but my hope is built on nothing less, than Jesus' love and righteousness. I have hope and it is that this world is not our home, if Jesus is your savior you know that life on earth is but a fleeting moment compared to our eternity in heaven. This said for sure, that our life on earth is not easy, but worth the trials to do God's will and live in the hope only He can give.
April 10, 2006
Jack walked the first lap in the Relay For Life Cancer Fundraiser on Friday night. He looked very cute in his survivor sash. Rob and his mom Elaine took Jack and as caregivers they were able to walk with him. Jack had a blast, little Grace from chemo was also there. I think they were the only 2 little kids walking, I am sure that they had fun.
When the nurses had originally told me about this and asked us if we would participate I said to them, we have not survived it yet, and they said as long as you were living you were a survivor even if you had not completed your treatment or were in remission yet. Jack was thrilled to participate.
You will notice that Jack decided to cut his hair short again. I think it looks better kept short, it is so thin and growing in with some real funky hair patterns, I am glad he thought it best to go ahead and get it cut. Before chemo he had thick beautiful hair and I can remember how it felt to run my fingers through it.
Sarah sent me this scripture today, I had it on my sticky notes on my computer screen already, I have found much reassurance through this verse.
Blessed are those who trust in the Lord. They are like a tree planted along a riverbank with roots that reach deep into the water. Such trees are not bothered by the heat or worried by long months of drought. Their leaves stay green and they go right on producing delicious fruit. Jeremiah 17:7-8.
Scripture has blessed me so much. To have divine words to ponder or meditate on, hold on to, and even pray with, is such a blessing. I was thinking today of when Jack and Sophie were just 2 weeks old and both contracted RSV. Both came as close to dying as they could. Sophie coded and quit breathing, Jack was just as sick. I remember my feelings during that time and I was so afraid. I was a Sunday christian, actually I was a Sunday morning, Sunday night and Wednesday night, christian, but there was no relationship with the Lord. He was a front porch visitor, I definately was a believer, I was grateful for the mercy poured out on me, but I had not studied the Bible enough to really have a grasp of how to walk through trauma with the steadfastness of the Rock guiding your way. So many times I felt desperate, lost, panic stricken, I had built my house on the sand and as there were no roots formed I was washed out to sea.
Now here I am 7 years later and have since spent some time in scripture, writing out scriptures, trying my best for this old brain to memorize some, and just relying on it to guide my path. When I was a little girl I remember the preacher at my church saying that the Bible was a guide to life. I was so confused throughout my late teens and early 20's, I just didn't have all the answers and it was apparent in my life and how I was living, but I didn't know where to go for them. Once I started to participate in in-depth Bible study, about 5 years ago, it seemed to break down this big book and I started seeing the guide to life that the preacher had told me about. Being a Christian is more than just living right, and following the rules, it is more about walking with God in the cool of the day, drinking in scripture. I desire more for myself than to be a "pharisee" who knows all the rules, follows them, and makes sure everyone else knows them too. I just want to be a follower of Jesus. A vessell where His mercy and grace in my life is apparent, someone who can find joy in the bleakest of circumstances because I know that in the long months of drought my leaves will stay green and can even produce delicious fruit. With God you don't just survive like Jack's sash said, you can be joyful in the dark, you can give a smile in your grief, you can bless and be blessed. Thanks to the Living Water that verse talks about.
I am forever grateful for the Almighty God.
April 06, 2006
Hello! Jack had chemo today and his counts were good. 1270 ANC. It was a great day, we got to see 3 other kids and their families. We finished in record time, we were walking out at 4:30pm.
We have had a busy week with our trip to Dallas, and we are glad to be winding the week down. Thank You, Thank You, Thank You, for all of your prayers this week. I just know that many people kept us lifted to the Father in prayer because the drive there and back went well, and the time Jack and I had together was wonderful. Jack has a 2 week break, just blood draws no chemo for the next 2 weeks. Please keep Jack and his healing in your prayers.
We had HIP last night at church (our mid-week service) and I think that it was the first time that I had just sat down and connected with the Lord since our Dallas trip. Most HIP nights there are tears somewhere on our row, tears that fall for so many different reasons, out of joy, gratefulness, lament, sometimes just because you are exhausted, worn out and ready to collapse - and you are welcomed into the presence of the Lord and you can just feel His presence surrounding you, holding you, consoling you, lifting your chin to see His glory and how He shines His love so completely over you. Like when you were little and something made you cry and you could hop up into your mom or dad's lap and you just felt better. That is what Wednesday night church is to me, it is like climbing up into the Lord's lap and just being held. Just being still in the presence of the Lord no matter what day or time or place it is opens us to realizing His presence around us. It seems like those busy weeks we don't take anytime to just be still and Know that He is God, His presence isn't as detectable, even though He is present at all times, sometimes we just don't slow down enough to take it all in. That is what Wednesday night's are for me, a time to slow down and drink in the Living God, pour out my heart, lift up my praise and just be. I think my tears were from all of the reasons above.
April 04, 2006
Hello from the Ronald McDonald House in Dallas. We are cleaning up and getting ready to head home to Abilene. The MRI went Great! Jack didn't move a bit, he was so perfectly still. He even got a new toy car from the tech who was taking care of him because she was so impressed. Next to us was a teenager getting an MRI in a different room. When we walked by there were about 4 people waving folders in her face to help her calm down and cool off a bit. I thought about how lucky I am with Jack that he can just go through an MRI without fear and claustrophobic symptoms.
This morning we met with Dr. Bowers. It took a long time, the radiologist had not read Jack's films from last night when Dr. Bowers was in with us. So we ended up waiting about 2 hours to get the information. When Dr. Bowers called us back in for the results after he had received them he said that there had been no change in the tumor size. It has stayed the same over this last course of treatment. So the plan is to continue with chemo and see what happens. I think he could see the disappointment on my face and he said that this really is still positive news, the tumor has not grown, it has stayed stable.
That part is good news I am happy that things are not growing in there. But to say that I am not disappointed would not be very truthful. Jack was not happy either with the "stable" results. He was a bit miffed, but we will just deal with it and go on.
Next stop was the cafeteria. Jack wanted his usual Crispy Creme sprinkle donut, and ham and cheese sandwich before we left the hospital. The sandwich part wasn't open, and wasn't going to be open until 11am. As it was only 10am that was a bit of a problem. We got the donut, and he set it down on the table and said I will wait until the sandwich shop opens for my sandwich. So there we are sitting in a cafeteria waiting for a ham and cheese sandwich. I didn't think I wanted to wait an entire hour, so I told Jack, how about you eat your donut, then we can stop at a sandwich shop and get a ham and cheese sandwich a bit later on our way home. Tears start welling up in his eyes, and he says, but I don't want to leave without my ham and cheese sandwich, in a very pitiful and sad voice. So here I am with this dilemma, leave with a crying kid who has just been very bummed out about the news of his brain tumor, or wait until 11am to access the already laid out lunch meat and bread on the other side of a window. Any of you who know me know that I am not a believer of fulfilling every whim of my kids, they need to know that life isn't fair, and sometimes you just have to deal with not getting what you want. But as the previous 2 hours were spent in a waiting room, then his disappointment with his results, I just thought maybe that was enough reality in one day for him and me. So I took my wallet and asked a lady who was currently serving the breakfast area, if I could possibly get a ham and cheese sandwich for my child, well along with those words came tears, which had just started to fall out of my eyes at a record pace. She took off her gloves and reached over the counter and said, don't cry, ofcourse we can give your child a ham and cheese sandwich. So Jack got his sandwich, and I was the center of a blessing of a woman who helped me take care of him. The manager saw what happened and just gave me the sandwich.
After eating the sandwich and donut, we made our rounds through the cafeteria to say our proper thank you's to all the staff who took care of our needs, and gave me a hug when I needed it. Thank you God for putting those people in our path today.
So we are heading home, hope to be there in time to pick up the other kids from school. Keep our trip home in your prayers. Our trip here was good, I felt the prayers all the way.