Tyson's Page

Email from Summer

11PM, Thursday, November 13, 2008

Well, we are in Washington.  It is Thursday night, we got here earlier today and were able to go ahead and get Tyson's blood drawn so he is ready for tomorrow.  We are very blessed to be able to stay at an apartment that the hospital owns and lets families use.  We are excited to be here together for this last round.   

Tyson has to be at the hospital by 9:00 in the morning.  He will probably start chemo by early afternoon.  His bath schedule will end on Sunday afternoon and he will get his stem cells on Monday afternoon.  After that we will be heading home.  LAST ROUND OF PLANNED CHEMO!!!! God is Good!!!

This past round was the first time that Tyson did not end up back in Washington with a fever.  It is obvious that God's people are still praying.  We are continuing to pray that we will have the same experience for this last round.  If that is the case, we could be looking at just 3 more nights in the hospital. 

We have still not received any information from Tyson's last MRI which was last week.  We have learned that no news is good news.  We feel if they had seen something bad, they would have contacted us.  That MRI is going to give them preliminary information to start making decisions, but the next MRI will make the final decisions.  That is scheduled for December 3.  On that day, he will also have a spinal tap.  This tap has got to be normal!!!  We are hoping that they will start giving us some kind of an idea of how they are leaning, but they may wait until the end of this cycle and the final results are in.  We just have to be patient. 

IF the final Spinal Tap is not normal, the doctors may consider doing full brain and spine radiation.  If it is normal, we will hopefully just need focal radiation (or less). 

Right now we are at a strange point.  We are very excited to have these chemo cycles over and are celebrating this milestone.  When we first drove into Washington in July and they told us 6 cycles, I remember thinking the end would never come - and here we are.  Just 48 hours from the end of chemo injections and just 21 days to the official end of the cycle.  But, on the other hand we still do not know what is next.  We know that God's strength has gotten us to this point and no matter what lies ahead, He will continue to get us through - one day at a time. 

Thank you again for your prayers. As you are spending time with your families this weekend, celebrate with us.  At one time, we did not know if Tyson would even make it this far, and he is so close to the end of this phase.  You prayers have gotten us this far and will continue to keep us going.  We will forever be grateful. 

Specific prayers:

-Pray that this cycle goes well.  His counts will still fall and he will be at risk of getting sick - he needs protection from all of the normal winter kid germs.

-Pray that he continues to keep his strength and his weight up. 

-Pray for our understanding as we start to get information about the future

-The Spinal tap - NORMAL!!!

-Pray that the last MRI shows even more good results

-Tyson did get more nauseous with this last cycle than he has in any other.  We will be increasing his medicine, please pray that this helps

-Our patience and peace as we wait

Update on Hunter:

Hunter is in the middle of his round 5 and praying hard for no fevers this weekend while his counts are low.  Sandy and Eric have 2 appointments set up with Radiation specialist in Bethesda and in Fairfax, but they may also be talking to a hospital in Boston.  Hunter also has final Spinal Tap that needs to be normal - please pray!!!  I told her that I would let you all know and that you would be excited to have something very specific to pray for Hunter. 

Note:  Tyson was not badly injured (just a bruise on the head); and returned home the same day

Email from Peg R in the Church office

Monday, November 3rd, 10PM

Tyson fell and hit is head and they went to AMC just as precaution with his counts as low as they are!!!!!   They sent them on to UVA and are giving him blood and whatever they do when his counts are this low -  they are going to keep him overnight as precaution!!!!    PRAY FOR THEM AS THEY ALL ARE TIRED. 

Thanks

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UPDATES AND EMAILS ABOUT TYSON'S PROGRESS/CONDITION

If you are new to Tyson's page, you will find here correspondence about his illness.  In the interest of space, we will include the current month and previous month.  If you would like to receive the entire history going back to July 2008, click here to email us and request the full transcript.

Email Update from Summer

11PM, Tuesday, November 18, 2008

YES!!! We are officially done with high dose chemo.  YEAH!!! God is good!  Tyson had a good round at the hospital.  He has been a little more nauseous so he is on 2 medicines for that through the week.  Other than that, he did great.  He had his chemo on Friday & Saturday and then got his stem cells on Monday.  We were home by 9:00 Monday night.  It is amazing to think that part of this journey is over.

It was so wonderful to have the family all together for this round.  And even though we are tired and all need a good nap, I would not have traded it for anything.  The kids were able to see the museums and play on a few playgrounds, we even saw a small kids play that the kids really enjoyed.  I asked Carson what his favorite part of vacation was and he said, "My favorite part every day is going to the hospital and giving Tyson a big hug and kiss."  I would have never thought that it would have meant that much to him to be near Tyson when he was in the hospital.  And obviously Tyson loved having everyone in and out all of the time.

By Thursday of this week Tyson will be in the house all of the time.  His counts will be dropping and we are hoping to avoid the fevers.  I am going out of town with the teenage girls on Friday night and all day Saturday.  We will be praying very hard that Tyson does not get a fever during this time especially.  We think that by Thanksgiving Tyson counts will be back up and we will officially be done with the round.  What a great day for this to happen.  Thanksgiving has a whole new meaning this year.

Tyson's MRI and Spinal tap are scheduled for December 3 and then we have a meeting in clinic on the 4th.  This should be when we start getting information on what is next.  Jeremy and I

are definitely at a strange point right now.  We are so excited to be done with the 6 original rounds but not knowing what is coming next makes us anxious at the same time.

For right now we are going to try and not think about future treatment and just enjoy the next 2 weeks. Just today Carson said that what makes him the happiest is when he is with mommy, daddy, Kaylynn and Tyson all together. The simplicity of a child always seems to amaze me.  In the middle of everything, he just wants us to be together and everything is great.  That needs to be what we aim to do every morning.  Just enjoy the fact that we are all together.

Specific Prayer:

~This medicine will control Tyson's nausea while we are at home

~No fever!!!

~Jared and Chyloe move to Stuarts Draft at the end of the week - even more of our family will be together

~The spinal tap on Dec 3 has to be normal - this is so important for future treatment plans

~Pray for us as we just continue to be 'anxious for nothing' and wait for information

~The rest of the family can stay healthy through the next months for Tyson's sake

Summer

Ridgeview Baptist

124 Ridgeview Drive

Stuarts Draft, VA 24477

540-337-1025

Direct mail to P.O. Box 477, Stuarts Draft

http:www.ridgeviewministries.com

Tyson's Page

Email from Peg R

6PM, Monday, November 24, 2008

Just got word from Jeremy.........   Tyson went to UVA today to check levels and get blood  ( normal for this time in the treatment) -   they started not long ago and after about 20 min. -  his fever spiked?????   they stopped the procedure waited and his fever came down some -  reaction to the blood?????  anyway they are going to try again and see if all goes well.    Jeremy was on his way over to UVA to be with Summer.   Please continue to pray for them.   If I hear more I will let you know.  Peg

HAPPY THANKSGIVING!!

Email Update from Summer

8AM, Thursday, November 27, 2008

We have always said that we would consider this round officially over when Tyson's numbers dropped and then rose back to normal.  That is officially today which I know was God planned .  It gives us even more to be thankful for. 

First of all, HAPPY THANKSGIVING to all of you.  As you go through your day today with your friends and family, enjoy and cherish every moment.  Last year, we thought it would be Jared and Chyloe's last holiday in America for a while.  Little did we know we were going to come close to losing another member of the family.  But today, we are all together and we will thank God for every minute of the day. 

I did want to give you a small update on this past week with Tyson.  Our big prayer again was to not get a fever and end up back in Washington; through your prayers, that did not happen.  Tyson has actually been healthier and stronger this round than any.  Knowing that he would need blood and platelets, we set up an appointment at UVA on Monday to have a blood draw and transfusions.  We were right on target and he did need both.  This kept him overnight on Monday for observation and home Tuesday morning. 

On Monday, we did hit one bump in the road.  When they started his blood transfusion, his temperature rose 1 and 1/2 degrees in the first 15 minutes.  This could have meant a reaction to the blood.  They immediately disconnected the blood and waited to see what his temperature did.  Within 15 minutes, his temperature dropped back to normal.  They debated what to do and decided to hook the blood back up and try again.  This time, his temperature rose just a little but not enough for concern. They were able to run the rest of the blood. 

This obviously was nerve racking for us as we waited and prayed.  But again, God protected his little body from trauma.  In the beginning, the thought of a blood transfusion scared me to death!! But, I read that during chemo, most people are affected more by low red blood cells OR white blood cells.  The white blood cells keep him free of infection.  It was then that I prayed that if one had to hit Tyson harder, that the chemo would affect his Red blood cells harder.  I know that trying to keep him free of infection would be a hard task, but then throw in the other kids and all the people we come in contact with and we could have serious problems.  I truly believe God answered that request.  We have been 6 treatment rounds without any infection (some kids have one ever round).  And to top that off, no one in the family has been sick one time.  GOD IS AMAZING!!!  This has meant that Tyson has had to have numerous transfusions due to his red blood counts.  Having  blood was a necessity when his counts were so low.  Every time they hooked up blood or platelets, I just prayed that God would put one more filter on that blood and keep it safe.  He has given me tremendous peace about all of this and all I can do is put it in his hands. 

Today, we are thrilled with how he is doing.  He seems very strong,  and is even showing interest in eating more and more.  He is standing longer if we lean him up against the furniture.  It will not be long and he will be starting to take steps.  Still we are nervous in the back of our minds about next Wednesday.  This one day will determine our next steps.  Please pray that in the next 6 days, the chemo kills any cells that might be floating out there. 

I pray that you will enjoy your holiday weekend as much as we will. 

Thank you for your prayers!!!!

Summer

Specific Prayers:

-Next weeks MRI and Spinal Tap!!!

-Continued peace as we wait for that day

-Tyson will continue to eat more things.  The nutritionist says that adding protein in very important right now (for 6 months he has only eaten Doritos, Cheetos, Yogurt drops and hot fudge cakes)

-Tyson will continue to get stronger

-Carson and Kaylynn will continue to stay healthy

Email from Summer

Thursday, December 4, 2008 at 11:09PM

We have a final time for our MRI and Spinal Tap.  It will be this Saturday at 10:00am.  We have to be there by 8:30am so Tyson, myself, Chyloe, and maybe Nanna will be going up Friday night.  Jeremy has a youth activity with the guys on Saturday and will be with them. 

They told us that it would be Monday before they could even look at the film.  They will try to call us by the end of the day on Monday just to tell us the preliminary results and then we will go back up there on Thursday to meet with the Doctors about what will be next. 

We are very anxious but just keep praying for peace and wisdom.  We know that God is still in control, we just need to be patient and wait for the next phase of this journey we are on.

We did get some great news about some of our friends.

Corey just recently finished his last chemo round and had his MRI and Spinal Tap.  His brain tumor and the tumors down his spine are GONE!!! Completely gone.  The doctors were planning to do immediate full brain and spine radiation but they are going to hold off for a little while.  They are going to give him low dose chemo for a while and wait for him to get a little older. PRAISE THE LORD!!

Hunter is scheduled for his MRI and Spinal Tap on December 22.  His parents have already had 2 appointments with radiation specialist to discuss his options.  As I had told you before, his parents were up in the air about what to do.  They did not want to do the full brain and spine radiation, but the doctors were leaning towards that.  After meeting with them, there is a new protocol for Hunter's type of tumor where the kids get full brain and spine radiation for 13 days and then focal radiation for 17 days.  Hunter's mom is very pleased with this.  It covers the spine but not at the extreme risk that they thought.  They also asked about the side affects for Hunter.  Because of where his tumor is, there is a possibility of short term memory loss in the future - THAT IS ALL!!!  Needless to say, Hunter's mom was relieved after the appointment.  The doctors have even started talking about getting Hunter back in school a little in hopes of having him back full time by February when radiation is over.  God is answering so many prayers.

We just keep praying that Tyson will have results that are just as good or better.  Please pray over the next week!

Specific Prayers:

-Pray for Tyson on Saturday, he handles MRI's well, but he will have to not eat for a few hours before and they will put him to sleep.  This is always a little scary.  Pray that he handles this one as well as the others

-Pray for Jeremy on Saturday, that he can just enjoy his day with the guys

-Pray for the MRI techs and the doctor performing the Spinal Tap

-Continue to pray for peace

-Pray that the results of these test are even more miracles

-Pray for Carson and Kaylynn - Carson is beginning to talk about when Tyson's medicine is over, when he doesn't have to go back to the hospital, and when he is all better

Email from Summer

Saturday, December 6th at 11pm

We are home and Tyson did great today.  He has been a little sick this week so the congestion was a concern.  But in the end, with a little extra oxygen, he did great.  We should get a preliminary report on Monday, but it should tell us if the Spinal Tap was normal.  Please pray hard for this result over the next 48 hours.  Thank you so much for your diligent prayers.

Summer

TEST RESULTS IN!

Email from Summer

Tuesday, December 9th at 1:30PM

We got the call yesterday afternoon.  Tyson's MRI showed no signs of tumor or anything questionable and his Spinal Tap was negative.  Praise the Lord!!!  We have an appointment on Thursday to discuss what treatment will be next.  We want to do what we need to do to stay ahead of this thing.  Please pray for clarity in our decision making.  I need to have peace that I am doing the right thing.  Also, do not forget to Praise God and thank Him for the answers to our prayers so far.  I would love to know that there is as much praise is going up on Tyson's behalf as there is request.  Thank you so much.  We will let you know how Thursday goes.  Our meeting is at 12:30.

Summer

Email from Summer

Thursday, December 11, 2008 at 9:30PM

Well, it wasn't quite the answer we wanted, but we are very thankful for the results. 

First of all, we are unexpectedly still in Washington today.  They realized that on Saturday the radiologist did not do a Spinal MRI.  This has to be done per protocol.  The Dr said that everyone would be shocked if it was anything other than negative, but it needed to be done.  The great thing was that they had a cancellation for tomorrow at 12:30 so we are just staying over for that. 

Unfortunately this cancels Carson's birthday party tomorrow.  Please pray that he understand and we find a time soon to celebrate.  This is the first thing that we feel that kids have missed due to all of this.  I think this is probably harder on Mommy than Carson. 

Anyway, We have an appointment tomorrow afternoon (another miracle that they were able to schedule this just today) at Innova hospital in Fairfax.  Tyson's Oncologist and Neurologist believe that he should have radiation right now.  He did say that when he envisioned Tyson's treatment, what we have now is where he wanted us to be.  He said "He is our best candidate for beating this" and we need to keep going.  He would like to start radiation as soon as possible and believes that we may start as early as next week.  He also believes that Innova is the best!!

We will know more specifics tomorrow after our meeting at 4:00 but we know that radiation will be Monday through Friday for 6 weeks. 

We have been told all along that we would be making this decision on what to do next and we have been praying for peace and clarity.  God did better than that.  Today when the Dr came in, he said this is what we need to do.  He said that Tyson is in the best possible position to beat this.  Catching it so early, surgeries going so well, tumor being gone, knowing that his body was responding to chemo, and then him coming through so strong, the Doctors do not want to do anything to minimize our chances.  Even though we would have liked to wait for radiation.  We are at peace that this is what God has for us and once again we did not even need to choose.  WE KNOW!!!

They did say that once his radiation was over, he would be on low dose chemo for a while.  We are in complete agreement with this as well. 

Obviously the only concern is that Tyson is still so young and still developing.  The nurse today said we would get better information tomorrow but there would be side effects of the radiation.  I asked her what she meant, honestly worried about the answer.  She said he would definitely have trouble with Math and Reading skills in school.  He would need a tutor or possibly special education, but he would graduate high school and he would go to college if he wanted.  If she is right (we should know tomorrow) we can definitely deal with that! 

Tomorrow is another big day.

The last thing the nurse told us as she left today was that this was good news today, it was a good day.  Praise the Lord for good days!

Specific Prayers

-Carson - pray that we can celebrate his birthday soon

-Tyson's MRI tomorrow, we need one more negative test.  He will also have to not eat for 6 hours before and this never goes well. 

-Pray that he handles the sedation well again tomorrow

-Our meeting with Dr Pettit at Innova.  Give us continued peace

-Prepare Tyson's body and brain for radiation.  Protect the growing and developing parts; minimal effect

-Us as we prepare for radiation and the effects it may have as well as the travel back and forth

-Our Christmas plans.  We are definitely rejoicing that we are all together, do not let us forget that in the chaos

Email update from Summer - Next Steps Shaping up!

Friday, December 15th at 10:55 AM

Well, today we got some really good news and some that honestly scared me.

The good news first. 

Tyson's Spinal MRI went fine.  We will know results sometime Monday, but everyone is expecting it to be negative. 

We went to our appointment with Dr. Pettit, he is a Radiation Oncologist that works at Inova Hospital in Fairfax. Again we feel like we have been past from the best in one field to the best in another.  Dr. Pettit was very friendly and very informative.  He was able to explain everything to us without belittling us - I appreciate that.  He also has 2 young children (2 years and 2 weeks old), this helps me trust him because I know he is thinking about his own children in making decisions.

The first thing he said to us when he met us in the waiting room was, "Wow! He looks great, I did not expect to see this."  He was thrilled to see how active and healthy Tyson is. 

He had talked to Dr. Paker and they were in agreement about the following treatment plan.  ATRT brain tumors normally require full brain and spine radiation especially if the tumor had contact with the part of the brain that produces brain fluid (it did have slight contact in Tyson's case), this increases the risk of spreading.  But since Tyson never had a positive Spinal Tap, he never had any signs of spinal tumors, they know the tumor was responding well to chemo, he had a chemo treatment directly into his spine, and he has no signs of anything right now, they feel like they are safe to not give him full brain and spine radiation.  Also, if we were to do this at such a young age, we would have significant side affects in the future, the main problem being damage to his pituitary gland.  Dr. Pettit said that doing the full brain and spine might give us a survival rate increase of about 5% but that he did not feel like that was enough when weighing the

risks involved.  He said everyone involved is comfortable that focal radiation is what we need. Dr. Pettit said if it were his child this is exactly what he would do.  

This means we have a CT scan on Thursday the 18th to get an update scan and the Dr. will begin getting the machine ready.  We have decided to do radiation at Innova, we were told that in the end the machine does the work and every hospital has a good machine, the difference comes in with the radiation oncologist and his team.  Our Nurse Practitioner from Children's told us that it becomes an art.  Getting the best outcome with the smallest margin of damage - Dr Pettit is the best when it comes to children's brains.  This CT scan will be combined with Tyson's MRI to create a mold of the focal area.  Then Dr Pettit will do his job.  He will actually be doing the most important part of this before we even start - he needs specific prayer over those 10 days.

We will start radiation on December 29th.  This will happen every morning at 7:00am.  They do it so early because, since Tyson has to be sedated, he cannot eat for 6 hours before.   We will go Monday - Friday for 30 sessions.  Our plan right now is to have a room at the Ronald McDonald house just in case we need it, but to drive it daily as much as possible.  We feel this would minimize the affects on Kaylynn and Carson since we would be back by lunch and all be home together at night. 

We asked about side effects of the focal radiation.  Daily Tyson might be more tired than normal.  Some have slight nausea but the medicine he is already on should take care of that.  And throughout he might have slight redness on his head, like a slight sunburn.  Long term, since the tumor did slightly cross over into the cognitive part of Tyson's brain, we might face learning problems.  That is all we should face.  PRAISE GOD!! I did ask specifically about personality (if you have ever met Tyson, you would definitely understand my concern).  The Dr did not even hesitate and said we should see no effect on personality.  Again PRAISE THE LORD!!!

We feel that all of this was great news.  We were obviously hoping to wait until later to do radiation, but, since the side effects are minimal, we feel this is Tyson's best chance for success.  We feel this is exactly the path we are to take and just pray for continued peace in this decision. 

Now to the one thing that scares me.  We did ask, "When would they consider this over."  Dr Pettit said that with every cancer, they say 5 years is the normal time range.  Obviously they never say that it is completely gone, but 5 years is the goal.  But, with an ATRT tumor, making it 2 years without recurrence is a big milestone.  Pretty much, if it is coming back it will probably come back within 2 years.  (Deep breath)  He said that once radiation is over, we will have MRI's every 2 months for the first 2 years and every negative MRI will be a big step closer.  I am grateful to know this, it gives me a more specific plan for prayer, but is scares me to tears.  It reminds us again how aggressive this is and that we need to be in constant prayer that God take this away for good.  2 years from February is our first long term goal!!

My struggle in knowing this is that I cannot forget to rejoice in the victories and answered prayers for fear of the future.  God already knows if Tyson is completely healed or if there is more to this path we are supposed to travel.  Either way, He is in control and will continue to provide peace and comfort.  I just do not want to live daily anxious for tomorrow.  Please pray for me in this area specifically.

We are very excited to know that we will be together at Christmas.  Jeremy's family will be coming to Virginia and we are going to have a very thankful Christmas together. 

Thank you so much for your continued prayers!!

SPECIFIC PRAYERS:

-Continued peace in the decision of no full brain and spine radiation - we are completely trusting the Dr.'s knowledge and God's hand

-Dr.Pettit from Dec 19 - Dec 29th he will be mapping out where every radiation ray will hit Tyson - Lord please give him wisdom and guidance

-Strength and travel safety as we go back and forth every day for 6 weeks.  This will be hard on Jeremy and me but we feel easier on Carson & Kaylynn

-For me! Daily peace is a necessity

-Pray that this radiation damages the bad cells and the good cells are able to continually repair themselves and stay healthy

-Radiation can increase the chances of cancer in other parts of his brain (by a few percent).  This is not something we can't worry about, but pray for it not to hurt:)

Email from Summer

2:00AM Wednesday, December 24, 2008

I feel like these last few weeks have flown by, but I am honestly ready to start treatment.  I get nervous when there is too much time in between things.  I know that I just need to enjoy the next few days, but I am just ready to get started.  You can't finish what you don't start.

Since the last time I updated, Tyson has had 2 more spinal MRI's everything is fine, but it has been an ordeal.  The day they did his brain MRI and his Spinal tap they should have done a spine MRI and missed those orders.  We had to go back to Washington to get his spine done.  The day after that, the nurse called to tell us that the MRi had something on it that they were not 100% sure what it was.  Because they did a low level MRI they needed to do it again.  They assured us that everything would be fine and they were sure it was not tumor.  Jeremy and his dad went back to Washington on Monday to do the 2nd brain MRI.  We got the call last night that it was fine.  What they saw was nerve endings and everything looked good. 

Tyson has already had his CAT scan at Inova hospital and Dr. Pettit has been preparing for his treatment.  He will be starting on Monday. 

It is amazing to see how fast Tyson is progressing now that chemo is over.  He is now pulling himself up to stand as much as possible and has started taking steps around things.  He is also saying a few more things.  Mainly "No" and "My ball". 

This past Saturday we were able to have Christmas with my ENTIRE family.  As we sat there, we were reminded of last year thinking it would be our last year together for a while because of Chyloe and Jared going to the mission field in China; then coming so close to losing Tyson; and in the end, we were all still together.  It was just one wonderful time of thanks.  It has made us realize more and more that we need to enjoy every minute with all of us because we never know what could happen to anyone we love. 

Tyson opened his first present of the day from Tyler - of course it was a toy with a ball.  His eyes lite up and he said "baw".  He spent the next half hour putting that ball on his head and having it roll off - he would just laugh.  I spent the next half hour crying.  Knowing that we came so close to losing him and understanding that we have a few years of fight ahead of us; I just sat there and watched him.  He is such an amazing little miracle that I cannot hold close enough.  He definatly enjoyed that day of Christmas.  He spent the rest of the day crawling around among the open toys and wrapping paper.  It could not have been a more perfect day. 

Specific Prayers

-Dr Pettit as he finalizes Tyson's  treatment

-Pray that the Ronald Mcdonald house is cooperative with us on staying  - we are trying to get a room for the full 6 weeks even though we will not stay every night. 

-Pray for strength as Jeremy and I begin this 6 week adventure - we start Monday, December 29th

-Pray that this works

Update on Hunter.

Hunter's final Brain MRI, Spine MRI and  Spinal Tap were negative.  He will be starting radiation on Monday as well.  The doctors are going to be trying to do his radiation treatment with just the mask and not putting him to sleep.  His family would love for this to happen so he would not have to be put to sleep every day.

Update on Corey

Corey is done with chemo, his tumors on his brain and spine are completely gone.  They are just going to put him on low dose chemo for a while until he is a little older for radiation (since he needs full brain and spine).  And he is getting his broviac catheter out on Monday - Praise the Lord!

Update n Bubby - URGENT

Bubby is at UVA.  He completed radiation great and the side of his brain that received the treatment was clear.  Unfortunatly soon after, the other side became swarmed with small inoperable tumors.  Since then, the side that received the radiation is showing signs of tumor activity.  Last week he was admitted to the hospiutal and 64 oz of fluid was drained from his brain.  He has been having daily seizures and they are now only giving him days to live.  Yesterday was his 3rd birthday. The Doctors are saying they would like to send him home tomorrow, but are not sure if he will even make it to that point.  Please pray for his family.   His dad is having a very hard time and his mom seems to be in denial.  She keeps saying that he will start to get better once he gets home.  I cannot imagine what she is facing in the next few days.  She is just sitting with her baby, waiting for him to die.  I have been to visit the last 2 days and plan to go back again tomorrow.  Please pray that I can be a small light to her in such a dark time. 

Summer

EMAIL UPDATE FROM SUMMER

Saturday, November 1st at 11PM

Tyson is doing so well.  On Thursday his counts were checked by the home health care nurse.  Even though they were lower than this time in the last round, the Dr. was pleased with what they were.  It was also expected that they be lower considering the high dose chemo is starting to compound on each other.  With this chemo it is actually supposed to take 28 days to get counts back up (his rounds are 21 days); but of the stem cell harvest and rescue speeds up the process.  This is actually still considered experimental in children, except in Washington.  Tyson's Oncologists are on the forefront of using this procedure in children.  Praise the Lord!!!

Yesterday Tyson seemed very tired and all he wanted to do was lay in our arms.  These are his normal signs that his counts have hit the bottom.  But this morning he was doing much better.  He played quite a bit, sat outside and watched Carson & Kaylynn play for a while, and even ate a some chips and cookies. 

At 2:30 he did have a low grade fever (3 in 24 hours means we go back to the hospital by ambulance).  But it was fine at 6:30 and just a few minutes ago at 10:30.  Mom is planning to go back to the hospital with me, so I hope by the time you get this we have not gone back. 

I would really like to not be in Washington on Tuesday night and Wednesday.  It has been my prayer for a while.  If he does get a fever in the next few hours or days, I will definitely be there Wednesday.

We have an appointment on Thursday with a radiologist who will be tell us what to expect if the doctors decide to do radiation.  We are getting very anxious for this because they should be able to be very specific about the area of Tyson's brain that could be affected by radiation.  What they tell us will be very important in our decision making.  Pray for good (or not bad) news. We will not be making decisions at this appointment, just getting information.  They will not begin making plans until after the next MRI.

We have come so far and even still the end seems so far away sometimes.  This chemo will officially be over 5 weeks from now.  I have definitely hit some low moments over the last week.  Just longing for life to be "back to normal", whatever that is.  This morning when we got up and Tyson was doing well, we took the kids to get a donut (their favorite thing) and then we ran to Waynesboro.  When we got home, the kids played outside, Jeremy worked on the house, and I cleaned.  It was so nice.  I remember thinking "this feels like a normal Saturday".  Then Tyson got a fever and I was quickly reminded that we are still fighting this. 

Please keep praying. 

Email update from Summer - Spectacular News!

Thursday, October 23rd at 10PM

Well, Round 5 starts tomorrow.  Praise the Lord!!!

Jeremy and Tyson left this morning to be at his consult appointment today. The doctor said his counts look great and he is ready to start tomorrow. The neurologist - Dr. Packer (The "Big" man) came to see them today. He said  that when it comes to Tyson's neurological development, he is a star and is doing great.

The plan right now is to do a MRI after round 5 and a MRI and Spinal Tap after round 6. They are planning to start making decisions after the round 5 MRI. Please pray for the doctors' wisdom.

I have something amazing to share with you. In June, when all of this started, we worried about many things, but from the beginning God gave me peace about the money.  Last September, Jeremy and I got a family cancer policy. This was God preparing us and taking care of us 8 months in advance.  This has just been a definite sign to us that God has been in complete control and He knew this was going to happen.

I can never express to you how much our church family reached out. Knowing that Aflac was going to help with the bills was one thing but knowing how we were going to pay for gas, lodging and food to go back and forth from Washington as well as all of the extra things Tyson was going to need at home was another story altogether.  Between the cards with money gifts and the money from the Yard sale, you have eased the burden of the travel and extra expenses. From the large monetary gifts to the $10.00 Dairy Queen cards just to take the kids for ice cream - you have eased a stress that could have put me over the edge:) THANK YOU!!!

And just this week we heard amazing news that is to us, our latest miracle. Our medical insurance has been wonderful from the beginning, but we have always been aware of a 1-million dollar cap and quite honestly we were beginning to get close. We were not sure what was going to happen once he hit that amount. Earlier this week, I called our insurance to see how close we actually were to the max and they told us our policy did not have a cap on in-network service and EVERYTHING Tyson has done has been IN network. We have verified this over and over and it is true - Tyson has no insurance cap!!!

You have been the Hands of God and we could never tell you thank you enough. THANK YOU!!! and PRAISE GOD for always being in control.

Summer

Email from Summer

Thursday, October 15th at 10PM

Well, the last week and a half have been a roller coaster of emotions. But, all in all, Tyson is doing well and that is the most important thing.  After round 4 of chemo on Monday, Tyson had his first Stem Cell Rescue (some of his own stem cells that were taken in the first round were returned to him.  This is a new procedure for children that is causing their counts to increase faster and stronger which is keeping kids on tract with there chemo. In short, it is helping to save lives like never before.)  By Sunday, his counts had dropped and had even gone to 0. Tyson got a fever on Sunday evening and we went to AMC. He was transfered to Washington just to make sure there was no infection. Here is another example of God being right in the middle of all of this. About 1 hour after Jeremy & Tyson got to Washington, Tyson had what could have been the start of a seizure. The nurse was able to quickly get him on oxygen and a CAT scan was completely negative! His blood work was also negative. God is good and He is in control. It was just a reminder for us to be continually praying and making sure we are prepared for any situation.

On Thursday his counts were up and we were able to go home with Tyson on antibiotics because there is a chance that his port in his chest was contaminated.  Jeremy and I are going to have to learn how to give him his antibiotics through his port because we will have to do this every 6 hours at home.

I say all the time, your prayers have gotten us to this point.

THANK YOU!!!

Update on Hunter

Hunter started his 4th round of chemo on Monday. He is also planning to go home tomorrow. His parents are also getting ready to make a big decision.  They are trying to decide if he may need full brain and spine radiation now or wait to see what happens. Please pray that the Lord will make their decision clear.

Email from Summer

9:30AM, Saturday, Decenber 27th

Just a few things to add to our prayer lists this morning.

We got a call from Inova and they have pushed Tyson's start date to Wednesday instead of Monday.  They said that Dr Pettit would like a few extra days to make sure everything is where it needs to be.  We are thankful that he is not rushing into things, but honestly it makes me so nervous.  I feel like we should be doing something.  I just need to continue to trust God's timing - it is always perfect - never early but NEVER late.

Please pray for Bubby's family.  Bubby pasted away yesterday morning at his house in Broadway.  He did make it home for Christmas, but it is a terrible time of year to have such a memory.  His viewing is tonight and the funeral will be tomorrow afternoon.  Please pray that  the gospel is presented clearly and people respond to God's calling.  Jeremy and I will be going back and forth and Sandy (Hunter's mom) is trying to come down. Please pray for our travels. 

Email from Summer

9:30PM, Wednesday, December 31, 2008

1 day down - 29 to go!!!

Yes, Tyson started radiation this morning.  We decided to take Carson & Kaylynn with us, they like to see what is going on - it helps Carson understand better.  So we all left at 4:30 this morning.  We made great time to the hospital and are hoping that traffic is that easy every morning .  His appointment started at 7:30 and we were walking out at about 8:40.  They did say this morning would take a little longer than normal just because it was the first time.  Tyson did great!!!  There were absolutely no problems.  Hopefully the full 30 sessions will be this easy and what we have been saying will be true - we just have to get through them.

We also got set up with a room at the Ronald McDonald House.  We have this room reserved for us for all 6 weeks.  This is going to allow us to go up late the night before and sleep there.  The RMH is right on the property of the hospital which also takes away the fear of not being able to be at the hospital due to weather.  When we know bad weather is coming, one of us will be able to go ahead and get into town.  The house is very nice and I even feel safe enough to be there alone if I need to.  This is such a blessing and a huge answer to prayer. 

Carson and Kaylynn were very excited to see everything.  The nurses took them to the radiation room and they were able to see Tyson's 'spiderman' mask and the spaceship with lasers that he  gets to get in every day.  They also saw the chart wall where all of the pediatric patients get a countdown chart to put a sticker on every day.  The nurses were actually not going to do one for Tyson because he is too young to understand, but Hunter was asking where Tyson's chart was - he wanted it to hang right beside of his.  Hunter is going to do the stickers on Tyson's chart for us everyday when he does his own. 

At home, Carson made his own chart.  This was actually his idea.  The other night when we were talking about 30 days, he said he was going to make 30 squares and put an X on them everyday when Tyson got home.  The next morning it was the first thing he asked to do, he wanted to make Tyson's chart.  Tonight before he went to bed he went to the chart and put one big X, he was so excited.  He prayed and thanked God that after Tyson got his 30 medicines that he would feel all better.  Carson never asks for things in his prayers - he always thanks God for things that are going to happen (everything from Tyson getting better to thanking God for the ice cream he is going to get after he eats his dinner).  The simplicity of a child - if we all had that much faith I think we would be much better off. 

We were able to spend the rest of the day in Washington as a family day and then went to mom and dad's for dinner.  I do not think I could have planned a better last day of 2008.  

As I think about this last year - what can I say?  I am just thankful that we were all able to spend the last day of the year together and I just pray we do that over and over again. 

As I look to the next year, I know that so many are making New Year's resolutions tonight that they will break in a week.     I don't do new years resolutions, instead I just need to resolve.  Resolve to keep moving forward.  Resolve to keep trusting God - no matter what.  Resolve to get through the next 6 weeks.  Resolve to get through every MRI that 2009 holds.  Resolve to get through one day at a time. Resolve to continue to pray for my son BELIEVING that:

  "I praise Him not because He heals, but because He can heal and even if He chooses not to; He is still God"

But also resolve to have the faith of my 5 year old son who is already thanking God that Tyson will be all better after 29 more medicines. 

Specific Prayers:

-Jeremy and I as we will become more and more exhausted as these 30 days come and go

-Carson and Kaylynn will be able to keep some sense or 'normal' as we get through this

-Pray for daily traveling safety

-Pray for Tyson's strength

-Pray that Tyson will not get nausea

-Pray that Tyson will begin eating more and more

-Pray that this works!!!

Summer

Email from Summer

11:00PM, Sunday, January 11, 2009

7 DOWN 23 TO GO!!!

Tyson and Jeremy left earlier tonight to go on to Washington.  Tyson will have treatment #8 tomorrow.  The time really is going faster than I would have thought.  Tyson is doing great.  So far, we are seeing no side affects from the radiation.  They have told us we may start seeing things about half way through.  That would be next Wednesday.  I met with the Dr. this past Tuesday and will meet again this coming Tuesday.  He says that Tyson is doing great.  He seems to be handling everything well.

At home Tyson is unbelievable.  He is pulling up and walking around everything he can reach.  He also has a small walker that he walks behind and he can go across the room.  Jeremy and I think that it would be the best moment if he walked himself into his last radiation appointment.  For those of you who have not been able to see Tyson, you really would not know there is anything wrong.  We saw a friend at Wal-Mart last week and she said she truly believes he has never been sick and we are making it all up.  My response is - that is just how much God has blessed us.  Other than walking, Tyson is completely on schedule with his milestones.  The pediatrician says his communication skills are wonderful for his age.  It is just amazing to see what he has accomplished in spite of everything. 

I think the most amazing thing about Tyson is his sweet compassionate heart towards others.  He knows when others are sick or hurt and he is very concerned for them and not himself.  The other day he was waking up from his radiation treatment in a room with an elderly lady who was laying waiting for her treatment to begin.  As soon as he opened his eyes, he looked up and saw her.  He immediately sat up (keep in mind he could not even hold up his own head from the anesthesia) and reached for her.  He was trying to get out of the bed around the nurses and kept saying "AWWW" He knew that she was sick and he just wanted to get to her and put his arms around her like he does with Carson and Kaylynn.  When the nurses asked what he was doing I told them and they cried.  In the middle of radiation treatments, he was concerned for her.  I know that God has amazing things in store for Tyson's future and I am more and more sure it will deal with compassion for others.  Even at 15 months, he holds that gift.  I can not wait to see what he will do with God's help!!!

Thank you everyone for your love and prayers.  We are getting so close to the end of this daily fight and you have been there every step of the way.  I do not know how we could ever say thank you enough. 

Summer

Praise the LORD!

Half-way there!

Tyson has completed half the radiation treatments without incident.  Fifteen down, Fifteen to go!!!  The doctors believe that since he has not gotten sick from it yet, that he will likely not get sick from it at all.  Please pray for the family as they travel back and forth most days.

Email from Summer

Satursday, January 24th at 11PM

I am sorry it has been so long since I have updated.  Even though our lives have been crazy, praise the Lord it has been uneventful.  We did get some information this week that I wanted to pass on.

Tyson has been doing GREAT!!! He is 17 treatments down and 13 to go.  The estimated last day is February 11.  He has had no nausea, no rashes, and at this point, no extreme tired days.  He is gaining weight and is actually 23lbs.  He is getting into a great rhythm of going to the hospital every day.  Every morning he wants to push the buttons on the elevator.  When we get to the Radiation department, he wants to play with the sign-in pen and then play with the remote to the game system.  When his morning nurse comes to get him, he can show you the way to the treatment room and gets very upset if the morning takes too long or if we stop anywhere on the way to the room.  This week we met with the doctor in a consult room before his treatment and he fussed at me like I was crazy as he pointed up the hall to the treatment room.  It is just another example of how we are so thankful that he is so young.  This is what he knows and he loves every day of life. 

The doctor told me this week that Tyson was doing great.  They took his blood work last Friday and they said it could not be more perfect.  This was a big deal to me considering his blood work was the first sign of something bad in June.  This was actually the first time his blood work has been in normal levels since then.  Praise the Lord.  The doctor also said, other than some redness, if we are not seeing any side effects now, we should not see any from here to the end of treatment.  Again it is just shows how powerful prayer is.  A 15 month old is halfway through radiation treatment, on the brain, without even a bad day.  God is amazing!!!

This past Thursday, Tyson had an appointment at Children's hospital for a check up.  They wanted to see Tyson halfway through the treatment.  (Yes we are more than halfway done - I just had to say that again).  We are still waiting on their blood work results but we have learned from them that no news is most likely good news.  One of the neurologists did an extensive exam on Tyson and was extremely impressed.  He reported that there was no sign for concern neurologically. Praise the Lord!!! He defiantly put on a good show for him.  The Dr. would get an instrument and use it on Tyson, then Tyson would take it from him and do the same thing to Nanna. It was pretty amazing.   

We were then able to talk briefly with  the oncologist.  Tyson was asleep by this point, but he said from everything he has heard, Tyson is doing great.  He did give us the next steps in our game plan.  They are going to schedule a post radiation MRI for 4-6 weeks from the end of treatment.  This did make me nervous that is was going to be so far out, but then they explained that radiation continues working for 4-6 weeks after the end of treatment so this MRI would be right at the end of treatment.  We are going to have a consult with them the week after the MRI.  This will give them plenty of time to review and compare all of the films from all of the MRI's.  This will be the next big day,  We need to begin praying now for this specific day. 

After this consult they will start Tyson on low dose chemo that we would give him at home.  Right now the talk is for 6 months.  We are defiantly in agreement that this is the best thing for Tyson, but we have gotten a little more information about the low dose chemo that makes us take a deep breathe.  This chemo can affect your counts which means his counts could drop.  We just saw Corey this week, he is on low dose chemo, his counts were getting close to neutropenic (being quarantined) and they had to take him off for 2 weeks to get his counts back up.  This just showed us that this could be more of a daily battle that we thought.  We are just praying that it will not affect Tyson.  Corey also had lost his hair again.  I know that this is not a big deal, but it has just been nice to see that hair coming back.  It is funny how impacting hair can become in the middle of this.  Tyson's hair falling out was the settling in of the beginning of this process;

hair growing back has been the small glimpse that this is coming to an end.  The thought of losing it again is hard, but I just keep saying , "It will grow back."

Even though none of this information is bad news, and we do not even know yet how Tyson will be affected, I am still nervous and a little disappointed.  The thought of the roller coaster of his counts starting over seems emotionally exhausting.  I know that we will get through it and I know we will just need to take it one day at  a time.  God's peace will get us through. 

One other praise - Carson had his 5 year check up yesterday.  Honestly this made me nervous.  They did vision tests, hearing tests, and blood work - everything was perfect.  PRAISE THE LORD!!!

Specific Prayer:

-For radiation treatments to continue just as well as they are going. 

-Safety as we continue to travel

-Tyson to continue to increase eating and gaining weight

-This MRI coming up in March - the doctors need to see NOTHING!!!

-Me - I worry about things that are too far ahead of me and I need to stop.  I will drive myself crazy over the next few years of MRI's; I just need to focus on today. 

-The family - we are together very little with the schedule we are on.  Just help us to continue to make the most of our time together.

-Carson and Kaylynn have been great through this - pray for them to make it through the next 2 1/2 weeks

ANNOUNCED IN CHURCH THIS MORNING, SUNDAY, FEBRUARY 1, 2009

Please be in prayer for Tyson as Jeremy and Summer had to return to DC early Sunday because there is a problem with tube that has been used to treat him.  They will do surgery to remove it and determine if there is any infection.  They will also have to decide whether to replace it with a "pic" to use for administering anesthesia medications during the remaining radiation treatments, or to do the rest of them using a needle.

THE GOOD NEWS IS THAT THERE ARE "ONLY" EIGHT RADIATION TREATMENTS REMAINING!!

Email from Summer

10:00PM Monday, February 2, 2009.

Well, it has been a crazy 36 hours, but in the end Tyson is fine!!! I will start from the beginning and give you more details on what happened.  Yesterday morning (Sunday), we were getting ready for church and Tyson was having breakfast in his seat.  He had a massive diaper explosion!!! One of the worst I have seen in 3 children.  He was covered from mid chest to his toes.  In the process of stripping him, we found that the cap of his broviac was completely covered.  We cleaned it with alcohol and started changing the cap.  We did realize there was yellow under the ring of the cap and when we took the cap off, there was yellow in Tyson's line.  This is a line that goes straight to his bloodstream above his heart.  We immediately drew the blood out of the line into a syringe and clamped the line.  We then called Children's hospital.  The great thing was that the Oncology Dr on call was also a Dr of infectious disease he was immediately adamant about removing the line. 

We packed up and left for Washington.  As soon as we arrived they put him on antibiotic and put a 2nd clamp on his line.  We then waited to go into the OR.  The worst part was knowing we would be going to surgery; Tyson had to stop eating.  He did not eat from 8:30 Sun morning until about 4:00 Sunday afternoon waiting to get into the OR.  Then, since they could not fit him in, he had to stop eating again at 11:30pm and could not eat until surgery @ 2:30 pm on Monday.  He was not happy!! 

Surgery went fine.  They got out his broviac and put in a pic line.  He will use this for the next 8 days of radiation and then get it taken out (as long as he does not get it out first).  They took blood culture when we got to the hospital and they are so far negative for anything.  This means that nothing made it into his blood stream.  This is the big praise.!!!  Getting bacteria into his bloodstream could have been fatal. 

We did miss his radiation appointment this morning, but since we were discharged at 7:30 pm, we will make it to Inova tomorrow.  Jeremy and I are with Tyson at the Ronald McDonald House.  Jeremy will take us to his appointment in the morning and then head home back to work.  Chyloe and Jared are coming to get us tomorrow or Wednesday morning. 

After all of the long hours of waiting and not eating over the past 2 days, we are thrilled that we are back on our crazy schedule.  Jeremy said today that this is probably the most time we have had together in the last 4 weeks.  And, in the end, Tyson is fine and that is the big praise in all of this.  It is hard to believe that we are just 8 days from being done with radiation. 

One other thing that we are going to have to start pursuing with Tyson.  His front 4 teeth are beginning to complete decay.  They are not sure if this is caused from the Chemo or from the MRI's but it has defiantly become a problem.  We are going to be setting up an appointment with the dentist at the hospital (hopefully in the next 2 weeks before he is done with radiation) and see what they want to do.  Hunter's mom is a dental tech and thinks they should be able to just cover and seal them until this is all over - lets pray it is that easy!!!

Thank you for your prayers over the last 2 days - they were defiantly needed and felt.

Specific Prayers:

-Tyson will not bother the pic line in his arm

-Tyson's teeth not to get any worse and the treatment will be easy

-Strength to get through 8 more days!!!

-The blood cultures continue to be negative - they technically watch them for 48 hours

-Safety as we continue to travel back and forth

-All of this treatment works!!!

-Carson and Kaylynn - we left so quickly on Sunday, they did not understand what was going on and had a rough day without us.

Email from Summer

Thursday, February 12, 2009 at 11:30PM

Yes, we are officially done with radiation!!! Praise the Lord.  Tyson finished treatment this morning, we checked out of the Ronald McDonald House and were back home by early afternoon.  We were able to come home after school and have a wonderful night together as a family.  What a great day!!!

I was able to sit down with Dr Pettit this morning and we had a wonderful meeting.  He said things have gone wonderful with Tyson and from a clinical and physical standpoint, "it does not get any better than this".  He said that Dr Packer would want a MRI every 2 months to make sure everything was still clear.  He said "No one can predict the future, but the Dr's feel that things are favorable that today Tyson had his last treatment."  This was obviously wonderful to hear!!!!

Right now we are waiting for the first MRI date.  It should be in about 5 weeks.  That MRI will give the Dr's a baseline of his brain post treatment.  They will also carefully lay out all of the MRI's from pre-surgery until now for a comparison.  After that MRi, we will begin low-dose, at home chemo.  To be entering a next step, this is definitely a good one.  We will learn more about the daily aspects  after his MRI, but we do know that it can affect his counts.  We are just going to pray that it affects them very minimally.  Corey has been on low dose chemo for 2 months.  He has had to be taken off twice when his counts dropped, but then his counts rose and he went back on the chemo.  We know that this could be a slight roller coaster ride, but it is definitely a ride we are willing to take. 

They way low-dose has been explain so far is this: After chemo and radiation, the reason cancer comes back is because there can be one cancer cell that 'hides' and as soon as treatment is over, it begins to grow and spread all over again.  Low-dose chemo is designed to find those individual cells and surround them.  This cuts off their blood supply and they eventually die.  This is causing less cases of recurring cancer.  It is definitely worth the 6 months of watching Tyson's counts. 

We also have a consultation with Dr. Greene (dentist) in Harrisonburg.  The dentist at Children's hospital could not guarantee getting him in and treated before he started the chemo.  The nurse practitioner told us to contact our dentist and, if he would see Tyson, they would be available for consult.  We contacted Dr Greene's office and they said they would love to treat Tyson.  He has an appointment in a week and a half unless they have an opening sooner.  Please pray that they can get him in sooner in hopes that we can get all of his treatment completed before chemo starts.

For right now, we are very excited to have our family back together for more that 2 days.  It has been a long 6 weeks that have actually flown by, if that is possible.  It has just been in the last week and a half that we have seen an affect on Carson and Kaylynn.  They have handled this ordeal so well but I know that they just want us together.  Carson said the other day, that we can not wait until the whole family is together for a movie night at home.  We did not get that movie night tonight, but I know that we will soon.  Being together, right here in our home, right now is something that Jeremy and I feel is very important to get Carson and Kaylynn back to their normal security level.  We plan to enjoy every minute of just being at home.  It is funny how the little things become soooo important.  If I could beg you to do anything this weekend, it would be to hold your children close, play a game or watch a movie, and just enjoy being together.  It is something you will never regret.

-Tyson could still have slight side affect from the radiation for about 6 weeks, pray that this does not happen

-Tyson will get his pick line out very soon

-Pray that the dentist can see him next week and we get a quick treatment plan

-Pray that the radiation still working finishes the job over the next 6 weeks

-A clear MRI!!!

-Pray that life will settle for us over the next few weeks as we get our family back on a schedule

-The low-dose chemo will have little to no affects on his blood counts

-Pray that all of this works!!!

Email Update from Summer

Monday, February 23, 2009 at 10:50AM

We were able to get an appointment with Dr. Green (dentist in Harrisonburg) last week.  Let me put in a plug, if you need a pediatric dentist - he is great!!! I was thrilled that he would even see Tyson and the fact that they fit him in so quickly is just one more miracle.  After he laid Tyson down and was able to get a good look into his mouth - I gasped!  It was much worst than I knew, the great thing is that he said it was better than he expected.  The bottom line, he has something wrong with EVERY tooth in his mouth.  Dr. Greene is going to consult with Dr. McDonald in Washington to get a plan that they are comfortable with, but he thinks he will have to pull or silver cap every tooth.  DEEP BREATH!!!   I have said over and over that we would deal with anything, I have to admit, this is not the side affects I thought we would be dealing with.  Life is all about perspective.  My 1 year old has gone through brain cancer chemotherapy and radiation - I think I can handle silver teeth for a few years. 

We did decide to leave his pick line in for a few more weeks.  We talked it over and if they are able to do some dental work before the MRI , it will be easier on Tyson to have it in.  We just need to pray that they can get a good plan for his teeth and do it quickly. 

We have a date for the MRI, it is March 18 at 11:00.  ANOTHER DEEP BREATH!!! The amazing thing is that Hunter's MRI is on the 18th at 9:00am - we are going to be there together once again.  AMAZING!  This MRI is going to give us a baseline after the end of radiation and then we will start low-dose chemo.  They do not expect to see any changes on this MRI, but it still makes me nervous.

In the last 9 months of this ordeal, I have not mentioned the other 'event' our family has been facing.  For those that do not know, my sister, Chyloe,  and her family are moving to the missions field in China.  As I write this email, we are on our way home from the airport dropping them off and my dad just said "They should be boarding the plane right now."  It has been hard for us all to deal with both of these events.  The one has kept our minds off the other always knowing that both events would change our family forever. 

The one major connection that the two events have is Chyloe and Tyson.  Chyloe had planned to leave for China in July and was disappointed when she knew that was going to fall through.  Not understanding why, she knew God was in control of the timing - she now knows she would have left 2 weeks after Tyson was diagnosed.  Once Tyson was diagnosed, it was very obvious why their departure date was changed to (at the time) January.  God knew she was called to China, but there was no way she would have gotten on that plane in July - He did not make her make that choice.  At that point Chyloe said a prayer that I cling to every day, "Lord, completely heal Tyson before I leave." 

Once Tyson was set up for chemo, we counted the cycles and realized that he would be done with chemo before January - Chyloe was to leave the first week of January.  As the date got closer, Chyloe's date began to be pushed back one week at a time and at the same time we found out about the 6 weeks of radiation.  We went straight to the calendar, Chyloe would leave for China the second week of February - 4 days before Tyson was done with radiation.  We thought that was great timing and that God had answered that request.  The amazing thing - Tyson was still not done - neither was God.  With one more delay of the visa's, Chyloe's departure date was pushed one last time - to today.  Ten days after Tyson was done with radiation!  Not only did he finish, but Chyloe was able to spend a week with him with no treatment before she left. 

The whole miracle came together this morning as I watched Chyloe pick Tyson up, hold him close to her face and say, "You stay healthy, and I will be back."  Tyson kissed her and laughed.  I felt like I watched God's miracle completely unfold in that moment.  The peace of Tyson's future was more clear in that moment than ever before.  "Lord, completely heal Tyson, BEFORE I leave."

Even though Tyson still has some low dose chemo left, I feel like it is just for precautions.  I am clinging to completely healed and I believe that moment today will forever be embedded in my mind.  God is amazing!!

Thank you so much for your prayers!

Specific Prayers:

-Pray for the dentist and the Washington team to get a good dental plan together

-Pray for his dental procedures coming up

-Pray for Hunters' MRI coming up

-Pray for Chyloe and her family as they get settled

NEW PRAYER REQUEST

March 18, 2009

Please be in prayer for Tyson as he fights the fever of unknown origin.  He was taken back to the hospital in DC on Wednesday.  His MRI is due to be done this week, also.  Please pray for excellent outcomes for both situtions.

Update from Summer

Friday, March 20, 2009, 10PM

First of all thank you, thank you, thank you for your prayers. They have defiantly been felt. 

I am sorry I have not sent information to you sooner, I hope that you have been updated but if you have not, let me give the GREAT news first.  Tyson's MRI was Wednesday.  The preliminary report has come back that everything is clear.  PRAISE THE LORD!!! Tyson's oncologist is out of town and will be back on Monday.  We will get the final report on Thursday but we are not worried. 

This has been an interesting week, to say the least.  After weeks of no doctors and appointments, Tyson decided we needed some excitement in our lives. 

Tuesday he was scheduled for a physical in Harrisonburg to get ready for his oral surgery on Thursday.  He woke up Tuesday morning with a fever that only got higher as the morning went on.  At the appointment, the Dr thought he had a ear infection which immediately canceled his oral surgery.  But, since Tyson still has a pick line, we had to get the opinion of Washington.  

With the pick line in, any fever has to be treated as worst case scenario.  This sent us from the Harrisonburg clinic to AMC for blood work, then to Augusta Peds for a check up.  After determining it was not an ear infection, we were sent to AMC for Tyson's first dose of antibiotic.  Since we had an appointment in Washington the next morning, we were able to get that dose and come home.  Needless to say, a 30 min check up turned into a 9 hour ordeal.  Not only that, having all this happen the day before the MRI was awful on me.  To many things reminded me of exactly what happened in June - it was not an easy day. 

Tyson's MRI was Wednesday morning and then he was to get an additional dose of antibiotic, get his pick line removed and go home.  Unfortunately, it turned out that Tyson's pick line had been contaminated.  (9 months with a line and this is the first time it has actually been contaminated - we have to be thankful) This required Tyson to be admitted.  So after our great news about the MRI, I had to leave Tyson and Jeremy in Washington and come home alone.  It was a very hard end to 2 very long days, but I just kept reminding myself of the bottom line - CLEAR MRI!!! 

As of right now (Friday night) they are still in Washington.  I am heading that way tomorrow and hopefully we will all come home tomorrow night together, we will know in the morning.  Tyson's has not had a fever since early Tuesday morning and he has never shone any outward signs of feeling bad.  The biggest problem right now is keeping him in his room.  Tuesday after his long day of appointments, we got to mom and dad's and he walked across the room for the first time.  God knew mom needed that.  Jeremy is having a hard time keeping him off the floor in the hospital.  Hopefully tomorrow night he will be chasing the kids around the house. 

I have to admit, I have had a rough week.  Building up to this MRI was harder and harder the closer the day got.  About a week and a half ago, I learned yet another lesson from my 5 year old.  I had been home with Tyson alone all day.  I kept feeling like I was seeing signs that something could be wrong and finally broke down to Jeremy after getting the kids to bed.  I put my head in his lap and cried, my exact word were, "I am so afraid this thing is coming back."  In that moment, Kaylynn started crying upstairs.  I ran up to check on her and she was crying in her bed.  She said, "Mommy, I am afraid." That is when Carson said, "I am not afraid, I prayed and that makes me not afraid."  I just hugged him.  He was exactly right, praying makes us all not afraid - if we will just do it. 

Thank you so much for your constant prayers. 

Summer

Specific Prayers:

-Tyson to come home soon

-After he gets home, he will be on medicine for a week and then pray that we can get his pick line out. 

-His oral surgery to be rescheduled quickly

-This Thursday we have a meeting about the specifics of the MRI and get information about the low dose chemo -    pray that this meeting goes well

-His medication at home for the infection goes well

-Tyson continues to grow and expand his appetite

-That all of this continues to work!!!

UPDATE FROM SUMMER

SUNDAY, MARCH 29, 2009, 10pm

TYSON'S WEEK

Well, we met with the oncologist on Thursday, It was not bad, but it definitely was not the meeting we wanted. 

First of all, the doctors say there is NO sign of tumor (Praise the Lord!!!) BUT (and this is what we did not want to hear) there is something.  Since the first surgery in June, there has always been a spot in the top left corner of the cavity that the doctors have always watched.  They originally said it was scar tissue or blood products from surgery (I think I have mentioned it before).  They still believe it is something like that, it has even gotten smaller during treatments, but they are at the point that they would like to know what it is. 

With every MRI they say that everything looks great, but there is still this spot.  Getting it out would take away any question of what it is.  So, they have sent the MRI films to Dr. Jane, Jr (the surgeon) at UVA.  He is currently reviewing the films and should let us know this week if there is going to be a 3rd surgery.  DEEP BREATH!!!

This was definitely unexpected, but the oncologist kept telling us that nobody believes this is tumor, but if they could get it out, the MRI's would be completely clear with no questions - this would definitely be peace of mind.  They said that Dr. Jane will give one of three answers 1) I have seen the inside and there is nothing to get out or worry about - no surgery, 2) There is something there and I think I can SAFELY get it out, or 3) There is something there, but I do not think we should take the risk.  Obviously, #3 is not the answer we want to hear - this would begin to scare me.  I know that surgery would also be scary, but we understand the desire to know what this is.  The oncologist also said, "We know how well he handles and heals from surgery."  We credit the prayers of His people for this.   

They said that if surgery is done and this 'thing' is removed, they would be able to put it under a microscope and see exactly what it is.  If is was scar tissue or nothing serious, it would be over and never be a concern again.  If it did show signs of tumor or cancer cells, they can do a 2-day gamma radiation treatment on that specific sight and then feel like it had been properly treated.  We would than continue on the same path we are on.  Either of these would be good results.  SO it is now up to the surgeon to decide if he can safely get it out. PLEASE PRAY FOR HIM!!!

We did talk about oral chemo and will be starting that based on the surgery decision.  The chemo does affect every child differently and there is a trial-and-error period to get things right.  Tyson's counts could be affected and this will be a complicated pattern of about 6 different medicines, but we truly believe this is the best thing to do.

Tyson will have to go to Washington every 3 weeks to get his blood taken there and then will have it taken at home in the off weeks. 

Now to the GREAT news, Tyson got his pick line out on Saturday morning!!!! This is a huge step in the right direction.  The fact that the oncologist is comfortable with this being out means they do not think Tyson will be spending alot of time in the hospital any time soon.  This also means that if Tyson get a temperature, we just give him Tylenol and treat him like a 'normal' kid - it has been a while since we heard that.

Also, his oral surgery was re-scheduled to this Thursday.  This in itself is a miracle.  The dentist was booked already and they contacted the other family to see if they would be willing to be pushed back a week - they said yes.  I do not know who this family is, but please send up a prayer for them and their child as they wait one more week for their surgery. 

As you can see, it has been an emotional roller coaster this week.  Every time my phone rings I am reluctant to pick it up because I am anxious to know the answer from the surgeon.  I want them to call today, but I do want to know the answer.  I just pray that it is a definite yes or a definite no and not a we should - but no.  It is also funny how after just a few weeks, it is easy to almost 'forget' what we have come through and just the thought of repeating some things makes me worry.  I guess this has been my biggest struggle from the beginning.  I just have to keep putting it in God's hands and resting in the fact that he loves Tyson more than I could ever imagine.

Specific Prayer requests"

- DR. JANE and DR. PACKER - they are making the decision on surgery this week

- Pray for answer 1 or 2 - NOT 3

- Jeremy and I as we learn the chemo information to do at home

- Prayer for the child who must wait one more week for oral surgery

- Pray that the chemo does not affect Tyson too badly - he loves going to school

- Pray for his surgery to go well on Thursday and the dentist is able to do all the work he needs to

- Pray for us as we wait for that phone call to come

- Pray that all of this works!!!

GREAT NEWS -- NO BRAIN SURGERY!!!

Oral surgery still on for Thursday, April 2nd, 9:30AM.

Summer will give more information later.

UPDATE FROM SUMMER

WEDNESDAY, MAY 6, 2009, 11pm

Dear Prayer Warriors:

I am so sorry it has been so long since I have written.  I got behind just with the business of life and then it almost became overwhelming trying to catch up.  I will attempt to fill you in and I hope I can make some sense of everything. 

Tyson, overall, is doing well.  He is walking all around the house and beginning to say some words.  It is great to see him begin to understand what we are telling him.  He becomes more and more of a miracle every day.

We have been in contact with an organization that has been assessing him in 5 different areas (speech, fine motor skills, gross motor skills, problem solving, and interaction with others) to see how he is doing.  As of today, they have cleared him of needing any assistance and say he is actually doing a lot better than average.  There is still a slight concern with his left leg.  When he walks, he tends to drag it behind.  This has definitely improved over the last few weeks and we will be keeping a close eye on it over the next few months.

Tyson began low dose chemo about 4 weeks ago.  This is a set of 5 medicines that are combined on a rotating pattern to serve as a maintenance chemo.  The purpose of this chemo is to search out any single cancer cells 'hiding' in the body and cut off blood supply.  This eventually will kill them.  He takes the medicine 2 at a time, twice a day and they rotate every 3 weeks.  He will do this for 27 weeks.  Every 3 week session will consist of 1 chemo and 1 other type of medicine.  The chemo is the one that can affect his counts and each has it's own set of side affects.

The first 2  were a chemo and acutain (this is used very commonly in teenagers for acne).  We were told that the acutain can cause mood swings - it did.  The great thing was that it caused swings in both directions.  He would get so mad and throw things and suddenly he would be running in circles laughing.  It was quit funny to watch.  About 2 weeks into that round, he caught a cold.  Between the cold and the chemo his counts dropped very quickly - below 500.  They went ahead and took him off the chemo 5 days early in hopes to get his counts up before the 2nd set.  Tyson kept having a fever every night and it suddenly spiked very high last Thursday.  We ended up in the ER and the next day the pediatrician discovered a text book ear infection.  This was causing his counts to stay low even though he was off the chemo.  The great thing was that even with the infection his counts were slowly climbing, this just showed how hard his body is fighting to do what it should do.  He went on antibiotic for the ear infection and on Tuesday, he began the 2nd set of medicine. 

It was definitely a tough 2 weeks for me.  I was not prepared for his counts to drop so far, so fast.  And then, last week, his hair fell out.  They kept telling us that this only happens sometimes, it was definitely tough on mom.  I quickly had to realize that this will be a roller coaster of 27 weeks.  We will be consistently in the ER and getting counts checked.  One day he will be fine to be anywhere and the next he will only be able to be at home.  This is definitely a treatment we take one day at a time. 

Since his counts were low, week 4 had to be put off which adds an extra week onto the end.  The more this happens, the longer the treatments will last.  Please pray that we can stay on track. The great thing is that we should not have to be in the hospital during these treatments.  Since his pick line is out, there is not as high a concern for infection.  If he gets a fever, we get his blood drawn and then give him Tylenol.  It is kind of nice to be told by the oncologist "just treat him like a normal toddler". 

The set of chemo that he started yesterday could possibly cause nausea.  We have medicine to give him for that, but our fear is that he will quit eating completely.  He doesn't eat very much as it is. 

We go to Washington right now every 3 weeks to have him checked by the oncologist.  At his next appointment, they will schedule his next MRI - sometime in June. 

I look at him every day and just pray that all of this has worked.  He is such a joy to have in our lives. He has just started playing and wrestling with the other kids.  He goes looking for a sword and then searches for Carson to start a sword fight.  He loves to get daddy in the middle of the floor.  He loves to give kisses and hugs and just be close to the family.  Just the other night I looked at Jeremy with tears in my eyes as I watched him play and laugh and said, "I am so glad he is still here." 

THANK YOU FOR YOUR PRAYERS!!!

Specific Prayers:

-Tyson's left leg will continue to strengthen and improve

-Tyson's counts stay strong and we can stay as close to schedule as possible.

-Pray that Tyson continues to eat. 

-Pray for the next MRI - we need to see nothing!!!

-Pray for me as I am already beginning to worry about it. 

Email from Summer

Tuesday, June 16, 2009 at 10:30 PM

I do not think I could have let this day go by without just saying thank you.  One year ago tonight, I was sitting in a rocking chair in the PICU at UVA holding my baby.  Not having any understanding of what was going on and definitely having no idea of what the next year would hold.  I was just in a daze.

I can remember going home to try to sleep for a few hours and try to give Carson and Kaylynn some comfort but all I did was lay on mom's couch trying to convince myself the day had not just happened.  At that point, I could not even yet pray - I was just numb. 

It was one year ago today that you began your prayers and you are still praying.  THANK YOU!!!

We spent today in Lynchburg.  Getting Jessica (Jeremy's sister) ready to start college in August and visiting Tyler's new apartment.  I think it was God's plan that grandma and papa (from Texas) were here when this day came.  It was just amazing to watch Tyson all day running around and laughing with the family.  It was a great June 16th. 

I can remember many moments of thinking, "how will we face this day next year without him?"  Only God knew.  He has brought us so much strength and comfort to get through this year.  God's miracle7s still continue and though we do not know exactly what the future holds.  I trust that all June 16th's from here on will only get better. 

Thank you so much for praying us to this point and through this day.  I just ask you continue to pray that we all see many more June 16th's. 

Email from Summer

Tuesday, June 9, 2009 at 10:30 PM

I wanted to give everyone a quick update on how Tyson is doing.  It is strange to be going so long between emails, but I guess that is a good thing because there is not to much to report.

I think at my last email, Tyson was getting ready to start his 2nd 3-week chemo round.  It was expected to make him nauseous.  He started it and it did not affect him at all.  He handled the first 2 weeks of that round wonderfully.  His counts were strong and he actually began eating more than has through this process. 

2 weeks into the treatment, he went to Washington for his checkup and they checked his counts.  His ANC had fallen to 270.  This meant he was neutrapenic.  The great thing now is that since he does not have his broviac or pick line in, it is not as dangerous for him and we do not have to be admitted to the hospital.  They actually discovered this the day before we were to travel to Texas for Jeremy's sister's graduation, and they still let us go.  They did take Tyson off of his chemo to let his counts recover. 

The plan was to go to Texas from the 23rd - 30th.  He would start back on his chemo (3rd 3-week round) when we got back.  Tyson was great in Texas and we had a wonderful time with his family.  The entire family was brought on stage in the church service for the people to meet Tyson.  The pastor actually planned his message around Tyson and spent most of the sermon interviewing Jeremy on the past year.  It was wonderful to meet so many more people who have prayed for Tyson and our family over the last year. 

Jessi's graduation was Saturday morning and actually Tyson woke up with a high fever and we ended up in the ER during the graduation ceremony.  Praise the Lord, there was nothing major wrong and he was released within an hour. 

This did start a roller coaster of fevers over the next 7 days.  Due to the fever, they pushed back his chemo again until we could discover the source of the fever.  For about 5 days, we were in and out of the pediatricians office and on the phone with Washington.  Tyson had no symptoms, but his fever got as high and 102.4.  This was a few nerve racking days for mom.  On Thursday night, Tyson face (the right side - yes the tumor side) swelled to double in size.  I thought I was going to pass out.  I called the pediatrician and we went straight to the office.  The result, one of 2 things.  The most likely was a virus in his spit gland, which runs down the side of your check or the mumps (Tyson has not had any vaccines since 6 months due to treatment).  We are actually still waiting on the mumps results, but since antibiotics have already cleared it up, it was most likely the virus. 

As long as nothing unforeseen happens, Tyson will start the 3rd 3-week round on Friday.  The chemo he takes in this round is a brand new medicine.  Please pray that there is no adverse reaction.  Starting with round 4, the oncologist is planning to slightly adjust his chemo amounts in hopes to not suppress his counts as much for the last 6 rounds.  Currently, the oncologist is very pleased with how things are going and feels that Tyson is handling the treatment great. 

Please pray for Jeremy and I , as well as our families, over the next few weeks.  It was 1 year today that Tyson was admitted to UVA trying to figure out what was wrong.  The 16th, he was diagnosed and the 19th was surgery.  It is hard on us do be dealing with a 'fever of unknown origin' - that is how it all started a year ago. 

I think it is very timely that I have started a new book - "Loving God with all your mind".  I have actually only read the first chapter, but the first chapter has already been alot to swallow.  It talks about "Whatsoever things are true...think on these things".  For someone who creates things to worry about, something this simple in a constant struggle.  I can't tell you how many time in the last 2 days that I have asked myself, "Is that true?"  And if it is not, praying that God would remind me of something that is TRUE.  Tyson's next MRI is scheduled for July 6th.  Getting through the one year mark and leading up to this next MRI, I need to focus on what is TRUE - not what I am scarred to be true. 

-Tyson as he starts his new chemo on Friday

-Jeremy and I over the next few weeks

-Pray that I am reminded of what is TRUE

-We are trying to start reducing Tyson's bottles - he needs to start eating more food and less formula

-Each week Tyson has to get his blood taken the conventional way, pray that he continues to handle this well

-The next MRI will show nothing and the spinal tap will be negative

-Pray that this continues to work!!!

UPDATE ON HUNTER

Hunter is actually done with treatment.  His oncologist did not feel he needed the low dose chemo.  He is completely done!!!  He actually had his MRI today and they are waiting for the results.  Please pray for Sandy and Eric as they wait for that phone call.

UPDATE ON COREY

Corey was scheduled for his MRI about 3 weeks ago.  Unfortunately, a few days before he began having bad headaches and then began throwing up.  A CT scan showed that a tumor had returned.  He started high dose, full brain and spine radiation last week.  This treatment will be hard on such a young body and will cause side affects later, but it is what they have to do.  Please pray for his family over the next 5 weeks of radiation and pray that the radiation works.

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