Pathology Report - Disappointing News....

Wednesday, August 15, 2012 - On Friday Dr. Wright called and said they got the pathology report back on Jake's leg.  The tumor didn't respond like they had hoped.  Only 30% of the tumor had died.  They were hoping for more like 90%.  That means that the chemo he has been receiving wasn't doing a good job of killing the cancer.  Because of this outcome everything changes from here.  

We had the option of adding two additional chemo medications to the three he was already receiving or stop with the chemo and implement two brand new chemo medications.  The two new chemo medications are Ifosfamide and Etoposide.  The Etoposide has a greater chance of giving him leukemia.  Dr. Wright didn't really know where to go from here.  There is a study being done right now on which is better for the patient but as of right now there are no reports on it.  She was going purely off of how Jake reacted to the chemo.  She thought where he always gets really sick that she was leaning toward the two new infusions.  She wanted us to think about it and on Monday when we were to come back we would talk to her.  She was also going to email a couple of her associates and see what they recommended.  We fasted on Sunday and I felt we should rely on the Dr.'s advise  and Aaron was inspired to add the two new chemo medications to Jake's map. 

We left early on Monday (August 13th) and went to see Dr. Scott, Jake's surgeon, and he removed some of the stitches for the leg. Then we were leaving to go to Primary Children's Medical Center and went to the car - it wouldn't start. Uggg!!!  Luckily Aaron had followed us down to SLC and was able to take Jake and I to Primary's.  When we got here it was 1:00 and Jake went to the Audiologist to have his hearing checked. Not much has changed with the hearing just some higher pitches lost, ironically those tones lost in the early twenty's anyway.  Then to the cardiologist to have his heart checked as these two new medications are very hard on the heart and kidneys.  Dr. Wright came in and spoke with us and she explained that she really wasn't sure what to do yet.  She told us that the survival rate is lower due to the outcome of the tumor on the leg.   She gave us some more options and Aaron and I spoke about it and after some time we thought it be in Jake's best interest to add the two additional medications to his current treatment.  Dr. Wright thought that to be best as well.  So here we are,  Jake is getting the Doxorubicin and Cisplatin right now and the in two weeks they will do Methotrexate and then the very next week it will be the two new therapy's.  It will add 10 more weeks to his therapy.  Right now he is very nauseous trying not to lose it.  He is laying very still trying to get through the infusions. Hopefully we will be on home on Friday.

As far as school Jake will not be able to register for school this trimester.  He will be doing some online schooling and hopefully he will be getting back the first of next year. 

Pre-Post Surgery days......

Friday July 27, 2012 - on Tuesday night (July 24th) we got a call at 9:30 pm from Dr. Scott's office telling us that Dr. Scott had rearranged his surgery's for Wednesday and instead of checking in at 9:15 am and surgery at 11:15am we were suppose to be there at 5:30am and surgery would be at 7:30am on Wednesday.  We decided that the only way we would make it on time and get any sleep we would have to leave that night.  Jake had gone with friends to hang out and he got home at 10:00pm and we told he we had to leave.  By the time we got everything together it was 10:30pm.  Aaron's parents followed us down to SLC where we found a hotel pretty close to the hospital.  We drove up to the hotel just after midnight. By the time we got everyone settled it was 1:30 am, but none of really were able to get much sleep.  

 They took Jake back to surgery at 7:30am and he was done at 10:15am, but with the recovery he didn't get up to his room until 1:30pm.  He was awake but still groggy from the anesthesia and slept off and on for the next few hours.  They put a epidural in his back to be able to give him meds like fentanyl, which is a muscle relaxer with some pain killers.   The epidural is a constant flow with a button he can push every hour if he needs more.  He said that it hasn't work very well.  He has struggled with getting the pain under control.  His nurses on Wednesday day and night were not the best and when he called to get more pain meds they would take a very long time to get to him and by the time they came he was in such pain.  That didn't make me very happy.   Needless to said I was stressed because Jake was stressed and it made for a long night.  By the time the morning came we got a new nurse and she was a lot better and she was able to control Jake's pain.  Which was so good!  

At 4:30pm, Thursday we had a visit from the Quorum Priests, Bishop Walker, and Brother Funk.  They talked to Jake for a little bit . It was we so nice for them to come.  Landon and Tanner Shoemaker, Paul and Ryan Funk, Jared Walker, Taylor Thomas, Taylor Compton, Zac Olsen, Brian Geddes, and Michael Grover all came!  Thanks guys for making Jake's day a lot brighter!  You all are such great Young Men!

We will probably be here until Saturday or Sunday. They are going to get him up walking tomorrow.  I'm a little nervous for that.

Thank you for all the prayers and kindness!

Surgery is Complete

Just received an update from Leisa, Jake's Mom, that the surgery went well today. He's in quite a bit of pain and the medical team is doing what they can to help make him comfortable. He is awake and alert.   One day at a time at this point!  A thought that I shared with Leisa a week or so ago was the Serenity Prayer.  Although this prayer is used in various types of addiction recovery meetings throughout the country, it is something that we can all can use in our every day lives.  Jake's surgery will change his life forever, but we must remember that it also saved his life.  I have every confidence that Jake will find this courage.


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An Everyday Hero

I frequent a basketball site about the jazz. While there I have made great friends. Many of them have offered up prayers and well wishes for Jake and his recovery. One of my friends is an athletic supporter for the Kentucky wildcats and works closely with the basketball program. When Michael Kidd-Gilchrist, the #2 pick in the past NBA draft, heard about Jake he wanted to help. He is still trying to come and visit but in the meantime he went out of his way to sign, to Jake, one of the Kentucky wildcats national championship balls and send it to him.

  

Everyday heroes can be found in a lot of place but a 19 year old kid who is about to become a multi-millionaire, Takes the time to recognize another young kid who is struggling and do what he can to help is an everyday hero. No matter what happens to Michael's career we will always be fans. Thank you from the Griggs family and we will always cherish your kindness.

Also Jake said that that was the coolest thing anyone had ever done for him.

--- Written by Aaron Griggs, Jake's Father 

Labs are too high.......

Thursday July 12, 2012 -   We were all thinking we would get to come home today and we just found out that Jake's labs came back too high.   Jake is really disappointed he doesn't want to spent the week before his surgery in the hospital.  We both are feeling really trapped!  But what do you do but wait....sigh.

Last round of Methotrexate

Monday July 9, 2012 - We are at Primary's again.  One more round of methotrexate before surgery.  Everything is set for the surgery on July 25th.  Right now Jake is resting he always gets nauseated before the chemo starts.  The Dr's are starting his anti nausea medications. 

Eric Merkley and his Mom Kris stopped in to see us.  It is always fun visiting with them!  They gave Jake some pointers to help with the sores in the mouth.  He told us about his fantastic journey down the green river.  It really nice to get answers to questions from people who have been here.  Such great people!  

Hopefully we will be home Thursday.  

Lung Nodule is Gone!!!!

Tuesday July 3, 2012 - We go to see Dr. Scott on the 5th and go back for methotrexate on the 9th of July.  Jake has been so sick.  We got home on June 28th and from then till now Jake has had mouth and throat sores.  He has hardly eaten anything.  He has been very weak that he has hardly moved from not eating.  Today he got Britton up to come wake me up to help him with some pain killers so we could get him some food.  That was 3:30 this morning.    (sigh)  poor kid!  he has sevier stomach cramps from not eating but when he does eat he get extreme nausea.

Monday I took him to go and get a MRI and CT.  We got there at 1pm and we didn't leave until 3:30.  wow that was painful waiting!!! We thought we would have to wait till Thursday when we see Dr. Scott to update us on the scans. However at this morning (which is Tuesday) Dr. Wright his Hemotoloist/oncologist called us and told us that the Chemo is working and the lung nodule is gone!!!!!!  and that the tumor on the ankle went from 11cm to 8cm.  Oh that made our day!  She did say that it wouldn't change the outcome of the surgery which is scheduled for the 25th of July. 

So grateful for all the prayers and fasting and the faith in Jakes behalf!  This is a testimony that prayers are answered.  Not always in the way we want but in the way our Heavenly Father see's fit. For what ever reason the amputation has to happen, this is a refining time for our family.  I hope that we learn!!  =)  They say that each trial is a building block for the next one.......ummmm anyone know how to dig a hole?!?! anyone want to hide with me ;)