Visit, and back again?

Oh my... we got the first bill for Jaden's first 22 days in the hospital. I can't believe that the hospital cost only.... not including individual Doctor fee, lab testing, and our last stay. The total cost is so far: $122,791.41 Wow!

Praise God we have insurance, we just don't know how much will be our % to cover. Please pray for this matter... we are far from being done with hospital visits. This will go on for 3-4 years. I have no idea how this will play out... please pray?

Tonight, Jaden has had a fever of 100.5-99.2... we are waiting on the Doctor for the ok to bring him back into the hospital. (If he is 100.4 we go back, but his temp dropped with a shower, and fluids.)

We have a 7am Dr. apt tomorrow for blood work, as Jaden is on his new drug for the WBC. I will be sure to let you know if we are back at Vanderbilt by morning. Otherwise; we will be re-admitted on the 14th of May for the second Consolidation.

Here are a few pics of Aunt Janey's boys, Josh and Shawn with Jaden. Jaden was happy to be outside for a few minutes, and breath "fresh air" as he said... now we wonder if that is where the fever is coming from?

The boys spent a few days here with Dylan and Alaina while we were last admitted. Praise God for good friends and family!
Love in Christ
Greg & Heather

our Family

This is our family with: Gramdma Donna, Greg, Me, Alaina, Grammy DD with Dylan-Alaina-Jaden, Grandpa & Grandma with us in Rome, and Greg in Baghdad.

This is the Willhite Clan... we all look forward to reading your post!

love in Christ

The Willhite's

April 26th, 2008

Jaden still feels really bad... with some vomiting and no real eating to speak of now. :(

We got his new meds (cost 1800.00) today, this will increase his WBC (White blood cells) as he will virtually have none when we get done with this chemo round. He gets chemo three times a day now. His little body is just getting hit hard, and it shows.

Please pray for Jaden, as it is hard for one so little to go through so much. Thank you for your faithfulness, and devotion! Please don't forget to write down the info on his donation fund, and bone marrow drive!

Love in Christ
Greg & Heather

Alergic reaction

Jaden has had an allergic reaction to something... I am not sure what exactly. We were up all night with his blood sugar levels again also. Please continue to pray for Jaden as continue all his new medications on this Consolidation.

Love in Christ
Greg & Heather

A-LOT-O-NEWS!!! :)

http://www.marrow.org/
This is the web site for the kits….
May 5-19 they are free on line.
**All you have to do is e-mail them and they will send it to you, and then you mail it back.. Barbara Nolan is the lady at National Marrow Donor program
Phone# 888-862-7769 Es. 105 She can help with everything…


We are in room 6422 (hall B) floor 6... same floor, next unit. They didn't have a bed open on the other floor yet. So far, so good... Jaden's surgery went well today. He is currently sleeping like a baby... so sweet!

So far as we know Jaden is doing really well on the chemo; but yes, this round may be a little hard hitting. He will be getting a few new drugs this time round to really "kick" the Leukemia/chromosome out of his system for good! Second Consolidation is another round of battle the bug!!

They will also be giving him "Filgrastim" (GCSF) to help him develop WBC, after his last round of chemo is given. They think if all goes well we may be going home as soon as Sunday!!! We are all smiles here!!

Again, we will have very low RBC or WBC counts to speak of when we leave... so visitors are at a
"less are better" stand point. ( Same, and safer for Jaden! ) We are a bit protective, but in this case you have to be.

Note: Jennifer Hansley and the Pastor are working on getting the Bone Marrow drive off the ground this spring, and the good news is the Social worker here at the hospital has some more inside contacts to save us money!

Jennifer is just doing a wonderful job, praise the Lord for her devotion unto the Lord!! She is truly a God send! The Pastor has graciously offered the "new" fellowship hall for the drive, and we are so very grateful for that as well!! We really love our local Church, at Greater Cumberland!! God bless all of you there!!!

We look forward to hearing from you all. Jaden loved all the cards, and gifts last hospital visit!!

Oh, our lead Doctor said the total aggressive treatment before maintenance will be 15 months now... and not the original 8-9 month plan. However, we are all trusting the Lord on this... and so far so good!!

Love in Christ
Greg, Heather & Jaden

(Grammy has Dylan & Alaina, then Aunt Janey till Sunday!)

Thank you family, friends, and Church... we praise the Lord for you all!!

Please understand?

I hope you all understand why we must exclude ourselves from the public eye?

It is one thing to not want to become ill... and another to know that if you expose your child to germs/virus, he could possibly die from a common cold!!

His immune system is totally depressed. His white blood count (wbc) is 0.39... it is supposed to be 4.90 which is a normal level. His neutropinic level is at 0.18 which is 180. That is supposed to be at over 1000, and the danger zone is 500 or under... Jaden is so far under he can't even be exposed to fresh veg., flowers, or fruit. (We are thankful it came up from 0.03!)

Crazy as it is... we hope you all know that we are trying to save our son the agony of dieing from an illness other than his cancer. The Chemo is working... praise the Lord!!

Currently we struggle with low grade temps... However; Jaden is still our little trooper!! We thank God for the Doctors, and the grace He gives us!

We also ask that you pray for us, as cabin fever is setting in! Being trapped in a hospital room for a month, and now home is hard on all of us mentally....and spiritually. Our faith is in the Lord, and we know our lives are in His hand!
Love in Christ
Greg & Heather In Christ;Heather Willhite

First remission reached

Ok... there are several "remissions" that Jaden has to go through to be pronounced in Total Remission. He has reached the first stage which is: Morphologic remission

The next phase will be not detecting the Philadelphia Chromosome and it is called:
cytogynetic remission
Once Jaden reaches cytogynetic remission... the Chromosome will be surpressed, or gone.

The last phase that he needs to reach is on a molecular leval... and will be as if he never had Leukemia... it is called:
molecular remission
We are one down... and two to go!! After that we just need to pray that the Gleevec will keep Jaden from getting the Leukemia back... due to the Chromosome problem.

Thank you for your prayers!!! We are grateful for your faithfulness!!
Love in Christ
Greg, Heather, Jaden, Dylan, and Alaina

Make a wish...

Jaden's surgery went well, but his blood count is still way to low to start the first Consolidation.

They want to give him one more week before they admit him. We are grateful for another week at home, as we have much to catch up on as far as household chores, and task to complete before we stay at the hospital again.

Today we talked with some officials with the Make a Wish Foundation. They are sending people out to talk with Jaden about what his wish is...

This is a real eye opener for us... because for children to qualify for this, they need to be terminal. They want him to get his wish by July. (Lord, a sinking feeling comes with this news!)

We are hoping for God's will to be for Jaden to live! We are praying for God's will to be done... over all!

Please pray for Jaden, and pray for strength for the rest of us... as the days can be trying and long. We ask for God's grace to overcome whatever trials we encounter, and grace to see things through whatever may come. We all trust the Lord... for He is good! Our lives are in His hands, and we will praise Him!
IN Christ
Greg, Heather, Jaden, Dylan, and Alaina

The Ronald McDonald house we stay at

Here are some pic's of the Ronald McDonald house. We truly believe that this charity is a gift from God!! It cost you either $15 a night... or nothing if you can't afford it. There is always food to eat, more than enough! There are 32 rooms at this one, and every day some group comes to cook for us. We believe that this is a worth-wild charity to donate time and energy any day of the year!!

Praise the Lord for the Christians who work here... and for the people/groups who support it!

In Christ

The Willhite's

Jaden was really enjoying last night with his X-Box 360... it is a modern wonder how they make this stuff look so real!

Other news... Jaden seemed to have an allergic reaction to something, and we are treating him with benadryl currently. Tomorrow is his bone marrow pull, spinal tap, and Chemo in the spine... and in his porta-cath. It will be a long day, and we may be re-admitted tomorrow if his reaction doesn't get under control soon.

Please continue to pray for Jaden!

Love in Christ

Greg & Heather

Jaden and Dylan playing their new X Box 360!

This is the best medicine we can think of right now for Jaden... he is ear to ear with smiles!! He seems to be doing ok so far... surgery on Monday!

Please keep him in your prayers!

love in Christ

Heather

If you look around you now... you can see all of God's wonderful creation! How perfect and sweet a reminder that we are all in His hands!!

Have a wonderful, blessed, beautiful day!

In Christ

Heath

Still home

We are still home praise God!! Jaden is still running a low grade fever, but not high enough to go back to the hospital! praise the Lord!

We are trying to catch up on household chores around the house... getting ready for the next hospital stay.

Keep the prayers coming!

God bless you!

IN Christ

Greg & Heather

PS: Here is a pic of the side yard... how gracious God is to allow us not to miss his wonderful creation this spring! :)

3am

Jaden has lost almost all his hair now... he is kinda self conscious about it. We are telling him we love him just the way he is! I think hats will be a good thing for Jaden!

Tonight Jaden made me cry. He said to Greg and I, "Do you see me over here, I am dying... your son is dying! I am going to die...Can you hold me?"

Jaden is very matter of fact about things... part of the Autism. Just plain and to the point! But, man... does that hit hard for us! We kiss, hug, hold him as much as we can!! I think he just felt alone, maybe it was something in the movie we were watching... it was just the way he said it... not sarcastic or mean... just like this is a fact... "I am dying...can you hold me"... I couldn't hardly hold back the tears!!!

Greg went over and kissed his hands... and told him we were right here for him always! It is hard to read Jaden, but we assume he is scared and try to assure him as much as we can... it is hard to do when we don't know ourselves what is going to happen.

It is 3:34am... we are waiting to see if Jaden's fever goes from 99.5 to 100.5. If it does, we are back at the hospital this morning. I dread it...

Keep praying for Jaden!! Thank you for all you do for us... we really appreciate it!!
love in Christ
Heather

First night home!

First night home...Jaden was/is very weak!

(J.P. had Chemo right before he left the hospital)

However; he managed to check his email.

LOL! :) Some things never change...LOL!

Never the less... it was wonderful to see him

here in our home. Also, what a wonderful feeling

to all be together as a unit again after almost a month!

Praise the Lord!

IN Christ

Greg & Heather

HOME FOR A TIME

Jaden is home for a time... two weeks (God willing). We have Dr. Appointments on the 11th, and 14th. He will have surgery on the 14th for the bone marrow pull and spinal tap; where they will also give him Chemo in his spinal fluid. We get to bring him back home after surgery assuming nothing goes wrong.

Two weeks from yesterday we will be back at the hospital... So; I guess it will be on or around the 18th. This is the beginning of Consolidation 1.

Jaden is home... but is not "well" enough to really be home. The Doctors and nurses realized that with my prior nursing skills, and the loving care we were providing Jaden... that we could care for him here. (There were no Sweet's available at the Ronald McDonald House) I have a great handle on his diabetes, and Greg and I are both on top of his every medical need!!

Also; Jaden Got an G-tube before we left the hospital. We can now push meds through this tube in his nose. The tube goes straight to his stomach, and bypasses his ability to swallow food, meds, and drink. We should be able to keep him hydrated, and his Gleevec is really yucky to swallow... so we can dissolve it and push the med easily.
(Gleevec doesn't come in liquid form, and can not be crushed)

Jaden is still totally immunodeficient... so we can't have him around anyone outside the family. We can't risk infection. If he has a fever of 100.5 we are re hospitalized. We don't want that at all! So, as much as we would like to visit with everyone... at this time Jaden is just to ill.

We are one month into a 8 month heavy regiment of Chemo, and if we can find a match... bone marrow transplant. It has to be a 10 point match to be possible... Thank you for all those who are currently getting tested!!

Jaden's total Chemo treatment will last just over 3 years. This will be a long road, and we will have many bumps... However; as for our house... we trust the Lord!

Love in Christ
Greg, Heather, Jaden, Dylan, and Alaina

Getting a home visit!!!

Good news! Good news!! We get to go home for maybe two weeks!!! We have a clinic visit, and diabetic appointment during the two weeks (And all his meds, insulin)... as long as he doesn't have a fever in the two weeks Jaden won't have to come back to the hospital until his scheduled Consolidation date.

We hope that his next hospital stay won't be longer than one week...
(that is with no complications) Then it will be back home for the remainder of time until the 2nd consolidation. (Again one/more week of hospitalization)

Praise the Lord!!!! Thank you for your faithfulness with all the prayers... so far... so good!!

Love in Chirst
Greg, Heather, Jaden, Dylan, and Alaina

IMPORTANT:
We are quarantined to the home until further notice... this may be up to one year or longer. No public places, or unscheduled visits from outside family members. Anyone who has recently been ill, or thinks they may be ill is NOT ALLOWED to visit Jaden. Please continue to send cards, balloons, and anything else you feel lead to send. Jaden loves mail!!! :)

We will be sure to let you know when Jaden can have visitors... or call to see if it is ok. Just run it by us first!! Thanks for understanding!!

Phases

Induction (4 weeks) Hospital
Consolidation (3-4 weeks) one/two weeks hospital
2 Consolidation (3-4 weeks) one/two weeks hospital
20%-25% life expectancy...or less with no other treatment past this point...

Next step will be Either:
1.Bone marrow transplant (100 days in hospital) ** if match is found
chemotherapy
54%-98% life expectancy with exact 10 point match marrow transplant :)

or...

2.Chemotherapy with Gleeveck at clinic/home/hospital therapy
total maintenance time 2-3 years until remission
50%-90% life expectancy with Gleeveck Chemo :)

One of our favorite nurses...

We couldn't ask for better care!

God bless them!!

In Christ

Greg & Heath

April 2nd

Ok, Jaden may get to go to the RM House on Friday... or home. Depending on if we can get the sweet or not. Jaden has about one-two weeks before he starts the consolidation period (last 4 weeks). Then he has to be hospitalized all over again for one/two weeks. One drug he takes will damage his kidney's if he isn't on IV fluids.

So, it will be a week or two for hospitalization. Then when the 4 weeks of consolidation is done, he rest a couple weeks (still on all the drugs, and chemo, but not as rough a drug regiment).

Then; we will have the second consolidation, and he will be hospitalized again. However; we are thrilled that Jaden may get to be home. He will need to be quarantined for the time we are home/RM house ... And when the consolidations are done, and we are home-home... for 6 months or more even. His immune system is at an all time low... so we can't take him to public places or risk infection in any way.

Thank you for your prayers!! Keep praying, and God bless you!
In Christ
Greg, Heather, Jaden, Dylan, and Alaina

PS: DD is here helping us today... Thanks Grammy!!!!