Wednesday, August 23, 2006 10:39 PM CDT

Hello Family and friends

TOday at 3:05PM our very dear friend Baby Max earned his angel wings...He fought a good fight along with his family but cancer ultimately took his body..He is now perfectly healed and in zero pain...We Love you Max... click here

ALso our other dear friend Blake was transported to PICU...His lungs are decreasing in their ability to function...He also had to have emergency surgery to remove the 200 ML of fluid off of his heart...Please pray for him to recover, and for his family to feel the comfort of our prayers. click here


Well we have a plan

We talked with Dr K and our NPs Sue and Carrie tonight...Dr K said we had ONLY 2 options for DOnovan.

1. To keep him comfortable and pain free and let the cancer take its course

2. Start chemo to lower his counts and then do a combination of Total Body Irradiation TBI with High Dose Chemo and then another transplant..

WE chose option number 2. Donovan has alot of fight left and I know that he would want this too...

There are many details to get into but I am so exhausted that I will update those tomorrow morning...

GOod Night my sweet friends

Love
Melissa

Tuesday, August 22, 2006 8:18 PM CDT

URGENT PRAYERS FOR OUR DEAR FRIEND BABY MAX

BABY MAX MAY EARN HIS ANGEL WINGS TODAY WITH A FIGHT THAT WAS INEXHAUSTIBLE...A FIGHT HIS PARENTS, FAMILY AND FRIENDS NEVER CEASED... HE IS A MIRACLE, AND WILL CONTINUE TO SHINE IN OUR HEARTS FOREVER...GOD BLESS YOU BABY MAX.. LOOK IN ON BABY DONOVAN YOUR FRIEND AND ALL THE LITTLE BABIES FIGHTING JUST LIKE YOU...

WE LOVE YOU...
click here

WE are going in to clinic at 4:20PM to have chemistries and labs drawn and then we are meeting with Dr K. to discuss our plan, pain managment, etc. I am anxious to have a plan so we can start doing something to fight this.

Wednesday Aug 23 2006

Mommy ( melissa ) is back...

Donovan is still in a lot of pain (bone pain and coming out of surgery pain )... But can I say that he is just so cute that he is still pointing at objects and making a slight grin...He is such a trooper... He woke up this morning all bloody...It was pretty gross..But we cleaned him all up and gave him a bath and he seems to be ok..The bleeding isnt as bad and if he doesnt make any sudden movements it doesnt come pouring out...

I took Dylan to look at a school today..He loved it...They were singing and dancing to the song, " if you are happy and you know it". Dylan jumped right in ( he is like his mommy a social bug ) and started having a great time...He sung out, " If your happy and you know clap, stomp shout hoorray." I just wanted to run out of the room and cry my eyes out... He was having fun and I was so happy...I worry so much about how this is going to effect him...But I think school is going to be the best thing he could go through right now.. WE still havent heard anything about todays plans but hopefully that will happen soon... We didnt get a chance to talk to Dr K yesterday. Sue Our NP is amazying and spent hours with us and we are just so grateful for her...

Although we heard news that wasnt that great, we did get news that we were very glad about...Thank you all so much...How we would do this without your support I am just not sure...

please bless our precious Donovan, our family, and every kid that has to fight everyday just to make it through..

I always dislike having to write this but we will be starting a fund for Dylan to go to school while Darren and I can both be with DOnovan and DYlan can have a normal happy 4 year old kid day.

WE are also trying to come up with other fundraising ideas so that Darren wont have to leave to work while Dylan, Donovan and I are here alone..

Also just a reminder, The Leukemia and Lymphoma Society The Light The Night Walk in Raleigh, NC is Sept 9th..Baby DOnovan has his own team...HIs team needs some walkers so if you are in the area he would love to have you represent him. The link to Donate and walk are at the bottom...

THANK YOU FROM THE BOTTOM OF MY HEART

love
melissa

Tuesday Aug 22 2006

GOOD EVENING,
MELISSA IS TAKING A BREAK TONIGHT SO DONNIE'S DADDY WILL BE UPDATING.
DONOVAN HAD A BIG DAY AT THE HOPITAL TODAY. HE HAD AN LP, BONE MARROW ASPIRATE, BONE MARROW BIOPSY, BIOPSY OF THE MASS IN HIS MOUTH, AND THE ENT ALSO TOOK CULTURES FROM HIS SINUS CAVITY. IN TOTAL, HE WAS IN SURGERY FOR ABOUT TWO HOURS.
PRELIMINARILY,THE LUMBAR PUNCTURE WAS GOOD IN THAT IT SHOWED NO CANCER IN THE SPINAL FLUID. THAT'S A BIG RELIEF. PREVIOUSLY, DONOVAN HAS HAD CANCER THERE. IT'S GOOD TO KNOW THAT AT LEAST FOR NOW WE WON'T HAVE TO WORRY ABOUT THAT BECAUSE THAT WOULD MAKE RADIATION A MORE IMPORTANT OPTION. RIGHT NOW WE STILL FEEL THAT HE IS TOO YOUNG FOR THAT IF IT CAN BE AVOIDED.
THE BONE MARROW ASPIRATE WAS A DIFFERENT STORY. NORMALLY, A LARGE SYRINGE IS INSERTED INTO THE HIP BONE AND BONE MARROW IS SUCKED OUT. APPARENTLY, DONOVAN'S BONE MARROW IS SO PACKED WITH OUT OF CONTROL CANCER AND WHITE BLOOD CELL PRODUCTION THAT IT DIDN'T YEILD A GOOD FLUID SAMPLE. THERE IS LITTLE DOUBT WHAT THE MEAGER 1CC SAMPLE WILL SHOW.
CONVERSELY, THE SAME BONE MARROW CONDITIONS MAKE FOR EXCELLENT BONE MARROW BIOPSIES. IN THIS PROCEDURE A SPECIAL NEEDLE IS INSERTED INTO THE SAME HOLE THAT THE ASPIRATE MADE, WITH THE INTENT OF GETTING A CLEAN CORE SECTION OF THE MARROW FREE OF PERIPHERAL BLOOD CONTAMINATION. UNFORTUNATELY, WE EXPECT THE RESULTS TO BE THE SAME AS THE ASPIRATE. THIS SHOULD PROVIDE THE MORE DETAILED PICTURE THE DOCS NEED TO BEST TARGET THE HODGE PODGE OF CANCER CELLS THAT IS CURRENTLY BREWING.
THE BIOPSY OF THE MASS IN DONOVAN'S MOUTH SHOWED LEUKEMIA CELLS AS WELL. MY WORD OF THE WEEK NOW IS CHLOROMA. I BELIEVE THAT IT IS THE SAME AS A TUMOR BUT WHEN IT IS THE RESULT OF A BLOOD CANCER YOU CALL IT A CHLOROMA. HOPEFULLY IT CAN BE TREATED WITH DRUGS.
THE SINUS EXPLORATION WAS LESS CONCLUSIVE. THERE WERE NO OBVIOUS SIGNS OF FUNGAL INFECTION WHICH IS A BIG PLUS BECAUSE THAT CAN BE HARD TO SHAKE. THERE WERE ALSO NOT SIGNS OF OTHER TYPES OF INFECTION, ONLY IRRITATION. THE ENT TOOK HER CULTURES ANYWAY SO MAYBE THEY WILL GROW SOMETHING WE CAN KILL WITH MORE DRUGS. (IT MAY SOUND ODD BUT THIS WAS REALLY ONE THING I WAS HOPING WE COULD PINPOINT AND TREAT BECAUSE IT HAS BEEN A NAGGING PROBLEM FOR DONOVAN FOR A LONG TIME, MAKING IT DIFFICULT TO BREATHE ETC..)
DONOVAN ALSO RECIEVED PLATELETS IN THE CLINIC AFTER SURGERY. HIS PLATES WEREN'T CRITICALLY LOW YET BUT HE HAD CONSIDERABLE OOZING FROM HIS NOSE AFTER SURGERY. THE COUNT WAS TRENDING DOWN ENOUGH THAT WE EXPECTED TO NEED THEM IN THE NEXT DAY OR TWO ANYWAY. SO WHY NOT CUT THE KID A BREAK AND HELP HIM STOP BLEEDING A DAY OR TWO EARLY. THAT'S WHAT WE DID AND IT SEEMS TO HAVE WORKED.
I AM SORRY IF THIS UPDATE HAS SEEMED VERY TECHNICAL AND ROBOTIC. MELISSA AND I ARE STILL IN A STATE OF SHOCK AND DIBELIEF THAT WE ARE RESTARTING THIS JOURNEY ALMOST ONE YEAR TO THE DAY AFTER WE LEARNED THAT DONOVAN HAD RELAPSED AND WOULD REQUIRE A CORD BLOOD TRANSPLANT THE FIRST TIME. THANK YOU ALL FOR YOUR INVALUABLE SUPPORT AND THOUGHTFUL PRAYERS. PLEASE DON'T FORGET BLAKE HAYNES WHO IS FIGHTING THROUGH HIS OWN SECOND TRANSPLANT.
LOVE TO ALL- THE RASMUSSEN FAMILY

Monday, August 21, 2006 7:08 PM EDT

QUICK UPDATE TUESDAY 11AM

We ran labs this morning to see if Donovan was going to need any blood products before surgery today...

His counts are:

WBC=76,000
HGB=10.4
PLATELETS 66,000

I AM A LITTLE FREAKED OUT BY HIS WBC..I THOUGHT SINCE THEY HAVENT GONE THAT DRASTICALLY OVER THE WEEKEND THAT THEY WOULD HOLD STEADY A LITTLE LONGER.. BUT I WAS WRONG...WE HAVE A MEETING WITH DR K TOMORROW..AND WILL HAVE AN IDEA OF WHAT TO BY TOMORROW..

I WILL UPDATE MORE LATER WHEN I GET MORE RESULTS.

THANK YOU FOR ALL OF YOUR PRAYERS, WELL WISHED AND SUPPORT...WE NEED IT SO MUCH RIGHT NOW...PLEASE CONTINUE TO PRAY FOR OUR PRECIOUS DONOVAN AND OUR FAMILY TO STAY STRONG AND FOCUSED..

LOVE
MELISSA


Hello

Latest update with Donovan...

WE took Donovan in early than we originally thought...He just wasnt feeling good..Nothing would console him..He had a hard time breathing, aches and pains, gagging and retching, and just over discomfort.

His labs today didnt surprise me but I was hoping that this was still a really bad dream...

The differential of Donovans White blood cells came back very ugly thursday.. I forgot to mention this..They came back as a hodgepodge of different cancer cells..It showed both ALL and AML...The nightmare is just overwhelming..Its very intense and I just want to wake up...

His WBC=43.4
HgB=10.8
Platelets=83,000

His platelets are still dropping and his WBCells are growing higher and higher..

His blasts today were 41 percent.. ( this means how much cancer is in his blood )

I am not sure what I feel except that I am not giving up..Like my dad says there are still pitches left in this ballgame to hit a grand slam...

So Folks its rally time for Baby D...

Tomorrow is his big surgery day...I am anxious for them to clear his sinuses so that he can breathe but that is about it..The other 5 procedures I am nervous about.. This will tell us the exact amount of cancer attacking his blood, bone marrow, and CNS and the tumor in his mouth, and the infection in his sinuses (whether it is bacterial or fungal)..

Our good Friend is really helping us out tomorrow with Dylan so that he doesnt have to feel the stress waiting around the OR waiting room..THANK YOU CAROLINE...

TOmorrow Dr K will be in clinic so after the results come back we will be able to talk with her and hopefully by wednesday she will have some different plans for us to consider.. I think that right now I will feel so much better having a plan and getting on with kickin the cancers butt..

Please continue to pray our precious DOnovan who is about to face the ugliest treatment to date...

Please also continue to pray for our very dear friends Blake and baby max..

God BLess our children that one day there will be a cure but until then, bless them with courage, peace, strength, and your everlasting love

Melissa

Friday, August 18, 2006 7:52 PM CDT

The GUestBook is for some reason not loading...PLease stop back by we love reading your messages...Thank you so much, Melissa

Sunday August 20th 2006

Good morning family and friends,

THANK YOU THANK YOU THANK YOU FOR ALL OF YOU FOLKS THAT HAVE PERSONALLY EMAILED ME..DARREN AND I REALLY APPRECIATE IT.. WE LOVE GETTING YOUR MESSAGES AND FEEL THE ABUNDANCE OF PRAYERS FOR OUR SWEET BABY DONOVAN AND OUR FAMILY. WE BEING AS STRONG AS WE CAN BUT WITH ALL OF YOUR HELP WE WILL BE EVEN STRONGER..THANK YOU THANK YOU!!!

PLEASE ALSO CONTINUE TO PRAY FOR MY DEAR FRIENDS BLAKE click here
AND BABY MAX click here ...

THEY ALSO NEED THE STRENGTH OF MIRACLES AND MANY PRAYERS.



Another early morning... I just wanted to give you an update on Donovan. Donovan did not feel well yesterday. He was gagging and retching most of the day and especially yesterday morning. He could barely raise his head..He didnt talk, move, or hardly blink..Darren and I were really concerned...But I suggested a bath..He just loves baths.. He took a bath and perked up alot..He was talking, playing and smiling..This continued most of the day with intermittant fatigue.

This morning Donovan is alert, happy, giggling, playing, and talking up a storm..I am so glad...He is still retching and gagging.. But I think he is really hanging in there...


I am trying really hard TO THINK of things I can do today to keep my mind off of tomorrow.. Tomorrow we will have to face the blood results and another confirmation that our sweet boy has RESLAPSED...(BREATHE/SIGH)

THANK YOU JODI FOR TALKING LAST NIGHT...HANG IN THERE..

God bless our children

Melissa and the Gang of D's


Friday AUg 18th 2006

Dear family and caringbridge family,

I am just now getting a chance to sit down at the computer and collect my thoughts..


I AM SO SAD TO WRITE THAT BABY DONOVAN HAS SADLY RELAPSED AGAIN...It is aslmost exactly a year since his first relapse ( timing for you )...January 17th 2005 Donovan was finally diagnosed after a week of testing, august 16th donovan relapsed, sept 2 2005 he relapsed again, and oct 29th 2005 he relapsed and now August 19th 2006he has relapsed for the 4th time..

I DONT EVEN HAVE THE WORDS TO DESCRIBE THE ANGST and GRIEF THAT OUR FAMILY IS FEELING RIGHT NOW...

YESTERDAY WE DREW LABS AGAIN BECAUSE OF ALL THE RANDOM SYMPTOMS. THE DOCS WANTED TO TAKE A CLOSER LOOK AT HIS BLOOD WORK..SURE ENOUGH BLASTS WERE PRESENT IN HIS BLOOD.

HIS BLOOD WORK SHOWED 21 percent BLASTS ( CANCER CELLS ) IN HIS BLOOD. HIS CHIMERISM TEST CAME BACK ( IT SHOWS DONOVAN'S CELLS VERSES HIS NEW DONOR CELLS ) AND IT SHOWED THAT DONOVANS CELLS HAVE REAPPEARED, WHICH FURTHER CONVINCED THE DOCS OF LEUKEMIA. HIS SPLEEN IS ENLARGED, HIS WBC IS UP, HIS PLATELETS HAVE DROPPED DRAMATICALLY, HE HAS SOME BRUISING, AND A MASS OF UNKNOWN ORIGIN..

THE DOCTOR TOLD ME TODAY THAT HE IS 99 percent SURE THAT DONOVAN HAS RELAPSED BUT IT WILL NOT BE 100 percent coNFIRMED UNTIL TUESDAY EVENING AFTER DONOVAN HAS A BONE MARROW BIOPSY, A BONE MARROW ASPIRATE, AND A SPINAL TAP..

WE ARE GOING TO CLINIC ON MONDAY TO GET A BLOOD DRAW AND TALK WITH PRE-OP ABOUT DONOVANS SURGERY ON TUESDAY. THE BLOOD WORK ON MONDAY WILL TELL US HOW QUICKLY HIS CANCER IS SPREADING..THE DOCTOR SAID BECAUSE OF DONOVANS HISTORY IT WILL PROBABLY BE ALOT HIGHER THAN IT IS NOW..( I AM TRYING SO HARD TO BREATHE RIGHT NOW )

DONOVAN IS ALSO GOING TO SURGERY TUESDAY FOR SINUSITIS, THE MASS IN HIS MOUTH, AND CONGESTION PROBLEMS WITH HIS NOSE..SO HE WILL HAVE SEVERAL SURGICAL PROCEDURES DONE ON TUESDAY. WE WILL HAVE PRELIMINARY RESULTS TUESDAY NIGHT. BUT UNTIL THEN WE ARE JUST WAITING..

WE PRAY THAT DONOVAN DOESNT GET REALLY SICK OVER THE WEEKEND. THE DOCTORS PRESCRIBED A MEDICATION FOR HIM TO HELP PROTECT HIS KIDNEYS FROM THE LEUKEMIA.. BUT THAT IS ALL THEY CAN DO RIGHT NOW...

PLEASE PLEASE PRAY WITH US FOR DONOVAN, OUR FAMILY, AND THE DOCTORS.

I AM TREMBLING AS I TYPE THIS AND KNOW THAT NEXT WEEK WILL BE THE MOST DIFFICULT FEW DAYS OF OUR WHOLE LIVES.. WE WILL HAVE TO DECIDE WHAT PATH WE SHOULD TAKE FOR DONOVAN..
WE CANT ASK HIM WHAT HE WOULD DO..DARREN AND I WITH THE COMFORT OF OUR FAMILIES WILL HAVE TO MAKE THE DECISION FOR HIM AS TO WHAT THE NEXT STEP WILL BE...

OUR ABILITY TO GO HOME WILL NOW BE VERY POSTPONED AND DURHAM WILL NOW HAVE TO BE THE PLACE WE HANG OUR HAT ONCE AGAIN. ON A LIGHTER NOTE, DURHAM IS A BEAUTIFUL PLACE, WE REALLY LOVE THE WEATHER AND THE COMMUNITY WE HAVE HERE..

PLEASE ALSO CONTINUE TO PRAY FOR OUR DEAR DEAR FRIENDS THAT ARE ALSO STRUGGLING AND FIGHTING FOR THEIR LIVES..

DARREN AND I ARE SO THANKFUL THAT WE HAVE THE CARINGBRIDGE FAMILY TO LEAN ON FOR SUPPORT AND WE ARE FOREVER GRATEFUL FOR ALL OF BABY DONOVAN'S GREATEST FANS..We really wish that each and everyone of you could spend a day with him...He is just the most upbeat, adorable, snuggly teddy bear you could possibly imagine..He is just a joy..

I am so glad that the past months have allowed us to really SEE him..I have had the most fun and Dylan has been doing so much better too...WE all have really been getting comfortable with our once a week clinic visit schedule..I am so glad we have the weekend before everything starts all over..

THANK YOU

MELISSA

Friday, August 18, 2006 7:54 AM EDT

I just checked in again on my little friend max..He was rushed back to the PICU last night..PLease send your prayers to him and his family..They are really needing them right now.

www.caringbridge.org/visit/maxjordan

Hello with the most recent update from this mornings clinic visit:


I am not sure where to start there have been a few new developments in the past couple of days...

Here goes:

Sue ( our NP) and I agreed that a repeat blood test was a good idea since yesterdays tests were not what we had hoped. Sue had ordered a blood draw to rule out EBV so it was easy to add. Donovans results came back very similar to yesterdays.. His WBC-17.4 HgB-11.0 Platelets dropped slightly and were 116,000. I was very nervous about his counts and still am..His platelets have more than dropped in half since a couple of weeks ago and his WBC has increased more than doubled. (YIKES)!!! Trying not to freak out yet.

Yesterday Donovan had a CT scan to look for sign of sinusitis.. The nuclear radiologist said that YES he does in fact have sinusitis and that he is impacted in all sides of his sinuses. So Donovan is scheduled to see an ENT very shortly. They are going to culture his sinuses to find out the root cause and what necessary action they will then take...It is very possible that they will do surgery next week.

Also, Darren noticed a mass on the roof of Donovan's mouth. This could be related to the sinusitis and all the pressure.. However, the mass is large and the docs dont want to take any chances so they are going to biopsy the mass during surgery.

WE also drew cultures today to rule out a possible infection that could be causing these abnormalities...The virus is called Epstein Barr. We will have those results early next week too...

Sue our NP and Dr Prasad took a look at him today and noticed his spleen was a little enlarged but not dramatically.. But because of this change Sue and Dr Prasad agreed that an ultra sound would be in order.

TOmorrow DOnovan will have an Echo done of his heart, a pulminary function test, and an ultra sound of his spleen...HOpefully we will have those results at the end of the day but because its friday we may not get them until monday..

Lots going on today but we are hopeful that DOnovan is in the best hands possible. ( basically wait for more results before we get too stressed)

Our trip to Indy has been indefinately cancelled...I am very sad but I wouldnt be able to leave now given what is happening with Donovan..The docs are moving very quickly with all of his tests for the possibilities I mentioned. He will start everything tomorrow, more monday and possible surgery tuesday...

Needless to say I am not sure if going home will be in our very near future as we once thought.

Please join us in prayer for Donovan..He has been through so much and we have been just enjoying all the great new advances he has been making..Donovan has been doing the cutest things. He still doesnt crawl, walk, or eat anything. I am afraid now that after this biopsy on the inside of his mouth he wont want to eat again..I guess that is minimal though in the big scheme of things. Crawling and walking, well I guess that means that he will be my snuggle bug for a little while longer which is ok with me...It is sad to think that he may be set back again...



Melissa

PS: thank you for not forgetting about our Fundraiser its been slow but I know one day it will all be open..
PSS: thanks to all who have donated so far for
TEAM BABY DONOVAN...If you are still interested in Donating to Team Baby Donovan for The LIGHT THE NIGHT WALK Luekemia and LYmphoma society the link is down below.. I hate to even ask because I know that we are now going to probably need more assistance to stay here longer...I do know we are being looked on from up above and some how we will make through this too.

Thank you all for your prayers, support, love, messages, generosity, and kindness during this time...PLease know that this is what truly enables us to go on day after day..ALl of the support from our caringbridge family..Thank you thank you thank you!!!

Wednesday, August 15, 2006 6:30 PM CDT

Hello Family and friends,

A friend in Raliegh has put together a Team for Donovan for the Light the Night walk here in Raleigh, NC. It is called " Team Baby Donovan" You can join the team if you are in the area as we would love to have you support Donovan.

I know our family has asked so much and feel that we are still not out of the woods.. However, we are asked to raise a nominal amount of 250.00 dollars...This money goes directly to leukemia and lymphoma research and has helped many families financially including ours over the past 19 months... That is why I ask if you can spare a couple of dollars please think about either joining The Baby Donovan Team or donate what you can...ANy amount is so appreciated and a special gift.. Thank you so much.. THe link to donate is at the bottom of the page.
http://www.active.com/donate/ltnRaleig/1849_donovan
Or you can simply cut and past this URL into your server...


UPDATE: Wednesday Aug 16th

Donovans CT scan came back being positive for Sinusitis..Because there are many different kinds we have to go back to clinic tomorrow to draw more labs to find out what kind it is... He will have to go to surgery to help him..I dont know all the details but I will find out more tomorrow...Also his thyroid tests came back and they are NOT normal...One part of his thyroid is low causing his other one to be out of normal too..This is going to be problematic to him and will now cause him to have frequent testing to check his thyroid.. I will know more about that too tomorrow...His Cortisol tests ( steroid) came back and it shows that donovans body isnt making cortisol so he will continue on steroids for a lot longer...I am not sure if our trip to Indy will be cancelled...I will find out more tomorrow...

Thank you for all of your prayers...OUr Teddy Bear had a very sleepy day today..He took a nap for 5 hours straight..But I hope it was his bodies way of healing..
I too hope they draw a CBC tomorrow to see where his White blood count is...But its probably high so they might not to repeat it..Having such a high WBC is very worriesome to me even if it means there is an infection...The higher the WBC the more possibility it could be something else... I will write more tomorrow morning after we get back from clinic...We have to get there at 8:30am to draw labs and talk with the docs about what is happening to him and his possible surgery..


Donovan had a great clinic day today...Dr K and Sue saw him in record time...yeah yeah yeah...

Donovans counts came back a little strange though.
His WBC=17.1 and His platelets were down a little from last week...His WBC last week was only 6.8 so it more than doubled from last week..Dr K is thinking its probably the infection that he has brewing in his sinuses..Tomorrow Donovan will have a CT scan done of his sinuses to see what is causing him to continually have these bacterial infections in his sinuses..Sue said that it is typical with transplant kids to have the problem..

So we plan on leaving for Indy bright and early Saturday morning and returning in time to see Dr K again...We are hoping that his counts are just him fighting off something and not anything serious... So we will be here another couple of weeks after we return from Indpls..

We continually rejoice in Donovans progress and know what a precious gift he is...Our faith is continually challenged everyday but we know that we are being taken care of from above...Thank you for your prayers and for everything...

PLease continue to send your compassion, empathy, and prayers to our friends so that they will feel the comfort of God's presence, peace, and healing...

www.caringbridge.org/visit/blakehaines
www.caringbridge.org/visit/maxjordan

God Bless and thank you

Melissa

Monday August 14th 2006

Hello

Tomorrow Donovan starts his 9 month studies...He will have all of his blood work done tomorrow. Wednesday he will have his CT scan and Xrays...And Friday he will have his pulminary tests and Heart Echo. We will hopefully get his blood results back at the end of next week.

We are planning a trip to INDY this saturday.

It will be the first time I have step foot in Indiana since Early October of last year...

That is so strange...Indianapolis almost seems foreign to me...I havent been there in so long I almost feel uncomfortable...OUr house is in no shape for Donovan so we are staying at my dads... We are in the process of fixing the house so that Donovan can be in it...I hope it doesnt take too long..

I wonder if Donovan will even remember it? He was so little when we left. It will be another transition.

PLease send your compassion, empathy, and prayers to our friends so that they will feel the comfort of God's presence, peace, and healing...

www.caringbridge.org/visit/blakehaines
www.caringbridge.org/visit/maxjordan

God Bless and thank you

Melissa

Wednesday, August 9, 2006 7:16 AM CDT

I ALMOST FORGOT DONOVAN TURNED 20 MONTHS OLD YESTERDAY!!!

YEAH!!...

I can hardly believe my little BABY D is not so BABY ANYMORE...ITS SO WEIRD,, HE IS GETTING SO BIG...

Dylan said yesterday, " mommy Donovan is big, he is much bigger" IT was so funny..Even Dylan can see the difference in Donny...ITs so cool...

I love my teddy bears!!!
Well I must say its a great morning because yesterdays clinic is OVER!!! Yeah.... Holy cow... I am not sure whether to laugh in horror or just cry...

I had to take both boys to clinic yetserday by myself...I thought it would be a fast day since we were just getting a checkup...

NINE MONTH STUDIES ARE NEXT WEEK....DUH TO ME....

I called our NP to let her know I was going to be there alone and asked her the best time to go in so that we had very small chances of being stuck in a 6X6 room without windows, comfortable chairs, or anywhere else for a very active Donovan and a rambunctious almost 4 year old to hang out in..

Well she said come in early since they had a lot of old timers coming in ( special kiddos that come in for there over 1 year appts, like 3 yr post, and 4yr post etc..)

So we got there at 11:45AM...

Dylan told everyone that his voice was lost and that he didnt feel well..So he got stuck with a mask and then of course we got the dreaded exam room for 6 hours...

I wont even go into the nightmare...but as a hint I am surprised Donovan didnt lose his voice and dylans became completely nonexistant...My voice is fine...I just stayed as calm as I could..I knew that it wasnt a good situation but it would hopefully only be this time...( I am shocked I stayed so calm since I am very sensitive to both of them being so out of control)but its OVER!!!

DONOVAN is a champ... HIs counts are awesome...He is doing great...
Dr K added another med to his list because we think he is having allergies...He has been consistently having sinus problems, congestion, and watery eyes... So Dr K added Zyrtec...

Donovans 9 month studies are next week...WE are hoping to do all of them in a one day marathon starting at 8:30am...

He will have CT scans, lung functioning tests, echo of his heart, a ton of blood work, cortisol testing, IVIG infusion, and something else that is slipping my mind...
Part of his blood work he will have his Donor cells looked at to make sure he is still 100 percent donor, a look at his immune system, and a check at his cortisol functioning..This test looks to see how well Donovan is producing his own steroids in his body...My thought is that its probably not great since he is very sensitive to the steroids he takes three times a day..I can tell when he is getting close to needing his next dose..He gets very aggitated, loopy, and fussy...So his body is probably not making alot of cortisol...

WE are very optimistic that his tests will be right on target and that we will be able to go home at the end of the month after we get the results!!!!

yeah yeah

Our family is so very thankful for Donovans progress and we know that it is by God's Grace, and the community of Donovan fans praying for him and our family... Thank you so much for including our family in your daily thoughts its working..

PLease also pray for our dear friends that are fighting like crazy...

With love and great thanks

Melissa

Sunday, August 6, 2006 9:19 AM CDT

Good morning

I would give a weather updated but I am not sure what the day is going to be like...I hope nice...

Darren left at the crack of very early this morning..He woke us all up at about 5AM and it took a half hour to really get us up and going..But he got the kids in the car and then there was I that was still asleep..ooopsss Sorry...The boys were both in the jammies...It was really cute...But yeah they fell asleep just before we got home and were able to go back to sleep...I ended up not being able to sleep...bummer...

Darrens flight left at 6:27AM and WE GOT there at 5:49AM he ran to the gate...

Thank you MICHELLE!!!! so much for making it possible for darren and donovan to make it home and for darren to get back to INDPLS!!!

Donovan is doing well depite his new toddler tantrums, shouting, and crying spells...ITs is so hard to discern what it is he is wanting and if he is really hurting or upset or just being a new toddler...HE is frustrated he cant move..He has been rolling around alot to get to one place or another but still cannot crawl or walk...One day BABY!!!!

THis week Donovan starts his 9 month studies...I am very confident that my sweet BABY D will once again have great results...Please pray with us that these studies will result in normal ranges and that his tests go well...

Dylan had a Tball game yesterday..Pretty funny the other team didnt show up so that split up our team and played anyway...Dylan decided it was more fun to wrestle in the infield so go figure he did and so did the second baseman, shortstop and the fake pitcher...very funny...When the ball was hit sure enough about 6 infielder jumped on the ball...The first baseman was the only one in the right spot.. Very cute...And completely hilarious...

PLease say special prayers for our friends Blake and MAx and for all the speical kids out there having to live with this terrible disease and other diseases...

www.caringbridge.org/visit/blakehaines
www.caringbridge.org/visit/maxjordan

with great love and hope

Melissa

Thursday, August 3, 2006 8:07 AM CDT

Good Morning from very hot hot hot North Carolina!!! YEAH

Wow, I am so glad to be home...My teddy bear is doing great and Dr K is very pleased with his progress kickin cancer's butt...

Donovan saw me yesterday morning for the first time in over a week and was just loopy and giddy all day long...He looks exactly the same and I am just so glad to be with him... I cant believe how much I truly missed him and how much he missed Dylan... Donovan just kept on Dylan all day long...I think Dylan ( like any big brother) got the hint that he was glad to see him too but of course only grinned through his blanket a few times...He is so cute...

Donovan's counts are steady and great...He starts his 9 month studies next week!!! Holy Cow... I cant believe its already been 9 months...It seems like we have been here for a long time but we have grown very comfortable here...We love being apart of the transplant community here at our quaint apartments and of course love seeing our new friends that move in, and going into clinic to see our old friends...

Donovan had OT and speech yesterday.,... He has slipped a little from just not being in the routine but I think it will come back quickly to him...Speech was kind of the same old song and dance. He didnt want to eat or even drink water..I thought that was strange he usually likes water out of a bottle...However, he hasnt seen Jen his therapist in a little while so maybe that is what it is...

Today he has PT...Donovan's arms are really strong but his trunk and legs are still not as strong so he is not able to crawl or walk..He can stand up with help which is truly amazying but we are excited to see some new advances...

Thank you all for your support,love, prayers, gifts, everything...We are so thankful and so truly blessed to have our two boys...We wouldnt change anything about them.. They both are blessed in everyway...

Please take a moment to also pray and think of some of our dear friends Blake and Max...They are both going through more trials to kick cancers Butt in hopes of their cure...

www.caringbridge.org/visit/blakehaines
www.caringbridge.org/visit/maxjordan

big hugs and lots of prayers

Melissa

Tuesday, August 1, 2006 1:43 PM CDT

Today is the day..

Dylan and I go back to North Carolina...I am so excited...I can hardly wait to get back t our very hectic lives back in NC ( strange I know )... I miss Donovan so much... I feel like this week has been so long...Although I am so sad to leave my sis and her family, I am overwhelmed with joy to know I will be returning soon to see my sweet baby boy...

Dylan is very excited too...But I know he will wonder tomorrow morning where his cousins are and his aunt and uncle...

We leave soon for the Airport for our 7 1/2 hour trip back to NC from Tucson...So by midnight tonight I should be in my bed in NC...YEAH!!!

Donovan has clinic today...I am glad because Dr K hasnt seen him in 2 weeks...Plus while Donovan was out of town his Gtube got pulled out twice...

yes 2 times...Darren spent a total of 13 hours in the ER in Indpls and at Duke to remedy the problem.... The hole that is in his belly kept closing up because it was so new and the docs had to restretch it so that the Gtube would fit and that is what took so long. Poor baby. I really hope that Donovans belly is ok and that we get that situation figured out so that it doesnt happen again!!!!

DOnovan got home from the ER last night at about 1 AM and they slept in before they got to clinic today...

I will update when I get more info and expect good news on Donovans progress and counts today..

Please continue to pray for my friend Blake as he undergoes his second transplant. www.caringbridge.org/visit/blakehaines

Please also Pray for my other special friend Baby Max.. He is another baby with Infant ALL like Donovan and has relapsed and is now in the process of high dose chemotherapy to get him back into remission so he can have a cord blood transplant just like Donovan...
www.caringbridge.org/visit/maxjordan

Prayers and hugs to ALL

Melissa (so excited to see my teddy bear)

Saturday, July 29, 2006 9:35 PM CDT

Hello From the Monsoon season in Arizona

Dylan and I are getting some really nice bonding time together...I know he has really needed the isolated attention...He has been so good...

Donovan and Darren are still in Indpls and will go back to Durham Monday...Although I wish so much that I was with Donovan ( I miss him terribly ) I know that this trip to see my sister and her new baby and of course my other niece Madison was way over due...

Donovan is a little out of sorts not being in Durham in what he has called home for almost a year but he is in the arms of very loving family so he is being well looked after...I cant wait to get home so I can see him...I stare at his picture on my phone and talk to him...He is so sweet when I here him call out mamamamama... I can hardly stand it..

Sofia ( my new niece the sweet little preemie) is now weighing in at a whopping 6 pounds even at over two months old.....

She is really thriving now that she is home and is doing just great... I am so thankful for those of you that have prayed for my sister and her new little peanut...

Tuesday Donovan will have his usual long day at clinic with Dr K.. She will back and be able to take a good look at him..

God bless our friends


Melissa

Wednesday, July 26, 2006 8:47 AM CDT

Good morning from Arizona

WE all made it safe to our destinations...However, I think Darren and DOnovan's was less hectic, crazy, or completely ridiculus...

But Dylan and I finally arrived about midnight NC time... Yikes...So tired... ANyways yeah we are here. But werent able to visit with anyone since it was so late.

We also dont have luggage which is the added bonus of having a crazy crazy flight course... Hopefully it will be found but like most luggage it looks identical to everything else...I forgot to put my ribbon on it...oooppps...


PLease dont forget to pray for our dear friend blake as he is going through his 3rd day of total body radiation in preparation for his 2nd transplant... Live strong buddy...Hang in there michelle..I am so glad your mom is with you..THinking of you guys like crazy..
www.caringbridge.org/visit/blakehaines
God bless


Melissa

Monday, July 24, 2006 9:22 AM CDT

Further clarification:

Darren would have been here in NC alone for a week with Donovan..HOwever his business was calling in INDPLS... SO he thought why not ask the docs if Donovan could go with him to indy while he worked on a few things...They said yes...This is JUST A VISIT!!!! The docs allow families to go home for visits to start to get used to things at home for families..BUt I was blown out of the water when the ok'd an entire week...But hey that is awesome...

But if all goes well that means we are even closer to going home.. We do hope by sept 1 we will be home if all goes well with donovans 9 month studies...


Quick update...Donovan is great his labs are great and his chemistries are great so he is almost to INdy...I am so sad I wont see my baby boy..Not only that but he will get to see home before me...Geez...I was hoping to take him for the first time myself but I guess things dont always go the way you want them ( obviously )...no biggy..

good morning

Well its been very hectic around our house this past week and weekend...So sorry for the lack of updates...

I wanted to take this opportunity to send special thanks out to our very dear special friend Grace for the great gifts for the boys...If only words could express the delight that we all have felt from your generosity...Much thanks to our very dear friend ursula for getting Donovans story heard...We love you guys..

Donovan has had lots of gagging and retching due to his C-diff and mostly because he hasnt had a BM in a week... He was very uncomfortable and finally Darren agreed that we couldnt wait until today to go into clinic. I called clinic yesterday morning...They said to give Glycerin suppositories and something else but I cant remember the name...

Darren also suggesting giving his belly a rest from food and only doing water with its necessary vitamins etc. And the NP said ok.

Donovan had a rough day yesterday..He tried and tried to poop and it was just awful. HE screamed and screamed and I had to help him and it was just so sad..I will leave it at that because it was just..........

Needless to say, DOnovan is feeling much better this morning.. However, Darren talked to our primary NP and she couldnt believe we ran plain water ( it was filled with its vitamins and potassium) but plain water. So Darren is on his way to clinic to have all of his electrolytes checked...OOOPPPSSS.. Darren told the NP yesterday that he was using plain water and the NP said ok..So Donovan got 700 ML of plain water...oooopppss

He seems completely fine but they need to make sure he is ok...Darren is leaving out of town to go back to INdy today and he is taking Donovan with him...So they need to make sure Donovan is ok...Dr K was ok with this and same with sue our NP if everything checks out at clinic..

I am nervous and I dont want Darren to take Donny with him but I know he is good good good hands...

Dylan and I leave tomorrow on a jet plane to Arizona to visit my sister and the clan...So we are so excited about that...

Dylan is very sad this morning. He knew that Darren was leaving and that he wasnt going with him...Dylan always rides in Darren's big truck...But this time its donny... SO he is a little bummed..but he and I will have a great time together...

I will update later on what happens at clinic...

Big prayers going to safe driving to Darren and my sweet baby donovan..And to me and Dylan on our flight back and forth from Arizona...

God bless our kids..

Please send our bud Blake big prayers as he has started his total body radiation today and the rest of the week to prep for his second transplant.. LIVE STRONG BLAKE!!!!
www.caringbridge.org/visit/blakehaines

love

Melissa ( sad we are all separated but excited to see my sis,grammie, and my nieces)

PS: Riley Nurses you guys are on call if baby D doesnt feel well while he is home...( praying you dont have to see him but know he would love to see you)

Tuesday, July 18, 2006 12:17 AM CDT

Its still Tuesday...So bear with me if I am rambling...Apparently I do that late at night...I go on and on blah blah blah....

Today we went to clinic early because Donovan was just gagging and retching all morning...he just didnt feel well.. I didnt realize that C-diff can really make you feel so crummy... His belly is upset, his bottom is upset and he feels kind of crummy. So I stopped his feeds so that his tummy could have a rest...In the mean time I gave him bolus' of just pedialyte water...he still has yet to have a BM.. I am sure he is really uncomfortable and is feeling crummy...

Dr K wasnt in today...So we didnt have a chance to talk with her about his idiosyncracies....However, Sue and Dr Parich were there and had some great advice and added meds that would help him through this rough patch...Donovan doesnt have to go to Clinic next week..He is pretty much doing so well that we can skip a week since I will be out of town.. I am going to arizona to visit my sister and her new baby Sofia... I am excited yet of course always sad to leave my sweet donovan... Donovan was great at clinic..I think he really likes to make a liar out of me...

He was just as sweet and totally adorable as always when we got to clinic but he did gag and retch in miss carlines arms..so sad but got through it like the tough little guy he is and then felt better and smiled...

I guess he has some sort of reputation on the unit and at the day hospital for really being a ham.. He gets so giggly, and funny when he sees all the people making a fuss about him..

To me he is everything I wish I could be and more... Hes got the toughness down to a baby art... ANd it has taken me over 31 years to learn...Wow what a long time to finally figure out what is important...


I truly wish all my friends and family a good night and hope that you all have sweet dreams with your angels looking out for you...

God Bless

Melissa (about to hit the hay)...

Sunday, July 16, 2006 11:37 PM CDT

Quick Addition:

I was able to talk with Sue our NP in relation to donovans Xray. His Xray was taken in the seated position and in that position it showed a 37 degree kyphosis curvature in the lower lumbar part of his back...This could be from him only being able to sit and also sitting with out a lot of muscle tone who knows...The Xrays are being sent to the orthopedic surgeon here... We were also told that Donovan has C-diff...Yeah more Flagyl ( three times a day for probably a while.) I also told her about his gagging and retching and the ENT specialist isnt available until the first of next month...Bummer...

So Donovan will also see the ENT specialist too...Sue our NP ordered Zithormiacin to clear that up...

How sad Dylan told Darren this morning that he didnt want to sleep in the same room with Donny because he was making noises and it scared him...So donovan has been gagging throughout the night and really breathing heavily..

We go in to the day hospital tomorrow for IVIG so we will be checked out then too...
he is currently crying from gagging and his OT is here...He just feels crummy...What a bummmer..I hate seeing him cry its just the saddest thing..His tears are huge...

He also has PT today so I hope that goes well...Crossing fingers...
Good evening family and friends

It seems as if this week has gone by pretty fast. Which I guess is a good thing but I wish it wasnt over...Donovan has had a pretty good weekend.. He and darren went to clinic friday while dylan and I took our new neighbors around the town... We still dont have the results from Donovans Xrays but we will get them tomorrow...Our NP called us but by the time we got her message it was pretty late so we didnt call her back...

I think if it was urgent she would have kept calling...So I hope that its nothing...( crossing fingers and toes)

Dylan had his first Tball game saturday...It was so cute...A bunch of 3 and 4 year olds running around like crazy...they had no idea what they were doing..It was seriously hysterical...Once the ball was hit every single fielder went straight for the ball...Kids were running backwards and then some didnt run at all...In the hour that was alotted for us we played 1 inning...LOL...It was just adorable...Dylan was so excited...And of course so were we...We were screaming from the sidelines and what a good little borther donovan was by cheering his brother on with his cute claping...( so cute )

Donovan is starting to get his mucus back and has been gagging more this weekend so that is a bummer... When he starts to do this we know he will probably be put back on antibiotic everyday for a week or longer..Which means he will be accessed from his port...WE have never had a port before so I hope it doesnt pose any more problems than a central line being accessed all the time..

He is just gagging on mucus and cant swallow and is miserable...But it only lasts for a few minutes rather than before where it would last for longer than 30 minutes at a time 10-15 times a day...( that was awful)

We are so proud of our little guy...He really is just amazying us everyday...He is doing and saying more and really is just a miracle..We are so blessed and know that the prayers from all of Donovans supporters are working and that our angels are also looking out for him..

Please remember to say extra prayers for our dear friend Blake that will be starting over with another transplant soon.. www.caringbridge.org/visit/blakehaines

Tonight I also heard very bad news that one of my friends and colleague's husband has suddenly passed away last tuesday ( my bday). PLease also include her family in your prayers as she and her 2 year old daughter Madeline find inner peace and strength to get through this very difficult time...

GOod night and many prayers to all that are struggling, maintaining, fighting for their lives...

Love

Melissa ( wired but going to try and get some sleep)

Thursday, April 13, 2006 10:56 PM CDT

Good evening fellow warriors.

LONG day and a very hot one here in North Carolina..Holy cow I thought we had humidity in Indpls but it is HOT and HUMID down here in a big way!!!!

Donovan had OT and PT today and had a great disposition the entire time..He was so cheery and playful with both therapists...WE are geering up for tomorrows xrays to make sure his spinal area of his lower back is correctly formed so that he will have the mobility he needs to start crawling and then walking...

Both Boys had a great day. Dylan had a blast swimming, riding his bike and of course watching every movie possible...He is just like his mommy...Lots of energy and a passion for great movies... LOL....

Saturday is Dylans First T-Ball Game we are all so EXCITED....I cant wait.. He is playing short stop...I think it will be so cute watching all these little kids running around not knowing what is going on...

I think Donovan will get a kick out of it too.. ( but from a FAR )...

Lots of love to all of our fellow kickin cancers butt friends as well as our friends kicking even bigger beasts...You all are always in our prayers and we only wish for the absolute best for each and everyone of you.. God Willing one day we will have a cure for all of these nasty diseases and we wont have to watch as our children suffer..

For those of you who asked: My Bday was wonderful...It was one of the best days ever..Darren made it just perfect..However we never made it to the cake. So we did last night.

We celebrated with the cake Darren bought for me tonight with some of our new dearest friends Michelle and Blake...WE had been waiting for the right time and tonight was perfect timing... Thanks Michelle and Blake for letting the fam just pop in.. I am glad I was able to blow out candles with friends vs alone... Thank you...

God Bless tonight

Memories:
Life brings tears, smiles, and memories. The tears Dry, the smile fades, but the memories live on forever and ever... Our family wants to extend our gratitude for the many prayers coming our way and especially Donovans way...I know they are working and soon we will be home...

I remember when Darren and I were thinking of names for our second son...It had to start with D and end with N Just like dylan and darren ( i am weird that way)... I am very much into underlying meanings to words and I came across the name Donovan from many different places: last names, football stars, and pop singers... But what really got me was the meaning: Donovan means: Dark Warrior..How perfect: he is tan and very much a great Warrior...

Good night to my all my warrior friends.

big hugs to all of our faithful Baby D fans.

Melissa ( about to watch 24 episode 2 hopefully without interruptions...) yeah



PS Please keep Blake and his loving family in your prayers as they are gearing up for another round with the beast.
Livestrong Blake. We're in your corner.
www.caringbridge.org/visit/blakehaines

Tuesday, July 11, 2006 8:31 AM CDT

ITS FINALLY THE DAY OF CELEBRATION OF MY BEAUTIFUL, LOVING, COMPASSIONATE, INEXHAUSTIBLE GIVING, AND WONDERFUL COMPANION, BEST FRIEND, AND LOVE OF MY LIFE'S

BIRTHDAY.

HAPPY BIRTHDAY MELISSA FOREVER AND EVER




PS: CLINIC DAY TODAY WITH DR K

Sunday, July 9, 2006 0:07 AM CDT

Yeah MOmmy is home and happy....I am so excited to be home.

As I was sitting in the terminal in COnneticut tears welled up in my eyes and I knew very shortly I would see my boys...

I couldnt wait to get home and be with all of my boys and I just couldnt hold it in...I think the people there probably thought I was a crazy fool..But that is ok... I am a little freaky... lol

Props ( hahaha to daddy) he was absolutely amazying while I was gone...And extra special thanks to nana and papa for their love, attention, creativity, and joy while they were in town with the boys...

And for my special birthday treasure hunt..That was the cutest thing ever and truly inspiring and emotionally lifting...

Life throws you a lot of turns but it is up to you to decide how you want to deal with those turns..You can be angry at the world, close up and not let anyone in, resolve to not act but to just let things pass you by and be numb to it, or you can feel every moment: you can feel the pain, sorrow, despair, fear, joy, smiles, love, faith, and peace in all that is truly Good...

My goal is to truly feel the peace within me and enjoy every moment as if it were the first..Writing in this journal and with your support I know I can do this because I have my entire family behind me and my husband lifting me up so that I too can heal from the wounds of this experience and move on with the confidence that Donovan and our family will always be together..

God Bless our children, hug them and let them know they are loved..

Melissa ( so glad to be home with my boys )


Props to all you Donovan supporters out there. Just need to tell you all upfront that Daddy is rockin the mic tonight. All is well in Donovan's home tonight except for no Momma. He has grandparentals Rasmussen onboard though to provide backup to Daddy. They arrived Wednesday and it has really been nonstop fun since. We all went to Bigbrother Dylan's T-ball practice this morning at the YMCA and itwasgweeaaat. Dylan was assigned to shortstop. Not too shabby big brother. Afterwards the fam took a brief nature walk near the diamonds. Not much fuana except for a few choice baby blue and lavender butterflies, a vivid black/yellow caterpillar, and one,two,three oh my gosh,ALOT of honeybees. Did I mention the walk was brief. Of course there was also the lush NC flora which provided some much appreciated shade after working on the ball field earlier. Also we did see a whitetail fawn on the way to practice. After baseball we more or less just returned home to prepare it for Momma's return tomorrow on the big airplane. Speaking of Momma, her Birthday is Tuesday the 11th. Donovan, Dylan, and Daddy encourage fans of this fight to send all manner of warm, uplifting thoughts and Birthday wishes, to help us make this a properly blessed day. Goodnite for now. The Rasmussen's wish everyone peace in their hearts.

Friday, July 7, 2006 9:43 PM CDT

Good evening


MOre updates.. Sorry this will be quick I am so tired so I am on my way to bed.

Donovan is doing great and everything checked out with the docs..

However Darren has a severe ear infection and had to go to the DUke med check today..They couldnt even see his ear drum it was so infected...YIkes...He got antibiotics and Donovan should be fine...

For those of you who have asked ( and I apologize for not updating) Sofia my sisters baby has been in the NICU for the past 6 weeks and is finally do very very well...She will be able to come home Sunday barring no complications...
The staff is finally allowing her to sleep in the NICU with her tonight and she couldnt be happier...Thank you all for your concern and prayers...We continue to pray and ask you to pray that she will continue on the path of health.. THank you all so much from myself and my family for praying adn thinking of our tiniest new addition..

Good Night

Bless our children that they will sleep with comfort and GOd watching over them

Melissa

Friday, July 7, 2006 4:24 PM CDT

Hello again with a quick update:

ITs friday and Donovan has to go back to clinic.. Dr Driscoll wants to make sure that Donovan is still doing well, and weighing in the same and not losing weight. I forgot to mention that he was having a lot of diarrea issues. We thought maybe it was C-diff and they checked for it but we dont know for sure...

Dylan is really having fun with nana and papa and really soaking up the attention...

Donovan is feeling great so hopefully this checkup is just exactly what it is a quick check and goodbye...crossing fingers adn toes...

LOts of family bdays coming up...Happy bday to my aunts and also friends..

Hello Everyone


Donovan had a great day at Clinic yesterday. He was accessed for the first time and he did great...What a sweetie...He still weighs about the same 23 pounds.. But healthy... He got IVIG and breezed right through it..


His counts were great..His liver levels were still doing well and not rising thank goodness..

Darren and His mom went to clinic and she was able to meet all of Donovans fans...It was really nice...

I am enjoying my time with my niece and brother and sis inlaw in CT.

I am feeling odd not being home with my boys...This is the first time ever that I have been away from donovan... I know he is doing well and in very great and loving hands so I am feeling ok..

ANyways, I gotta boogy because my brother is on his way home and we need to pick him up from the train.

love to all my family and friends and of course mt boys in North Carolina...

Melissa

Tuesday, July 4, 2006 3:28 PM CDT

HAPPY 4TH OF JULY EVERYONE!!!

Here in North Carolina its hot hot hot!!!... WE try really hard to swim and be in the cool airconditioning as much as possible...

Donovan is doing well...He is getting more of a rash all over his body from Gvh So I have been having to put two different creams on his 4 times a day...He is doing awesome and still developing and learning more and more and more...

He really can communicate what he wants which is so cute because he only really can say mamamama but his tones sound like words...So I hear, the words, ball, look, and my, and yeah, but they arent the real words but sounds.. But to me its very cool...

He is still trying very hard to move around...He is getting stronger and stronger everyday but his legs and middles section are holding him back from really moving..He has slimmed down so much but he is still pretty big in the middle...Out PT really thinks that he is so close that in the next few weeks he could go from being flat to sitting up on his own..Then we work on really crawling and walking...That will be one of the greatest days of my life...To see him able to stand longer than a few seconds, hold on to things, and be able to take steps...Wow I will just be so excited...

Anyways, we are taking it east and about to watch a movie..

I hope everyone has a blessed Holiday...

I always loved this holiday because I knew my Bday was just around the corner...But now its not the same...It doesnt mean as much to an adult anymore as it did when I was younger...

When I was younger, my birthday meant that summer was almost over and I had to go back to school..Now its just really another day...Its strange...


Love

Melissa ( loving the weather, loving the pool, and, really loving the airconditioning with my boys)

Sunday, July 2, 2006 12:33 PM CDT

GOod EVening folks


Today has been another Good day in the North carolina neighbor hood of Alexan Farms....

Darren surprised me with an early(very early ) visit by coming in this weekend instead of tuesday..He drove all night and got here at 3:30AM...

So we had a great day just swimming, playing, napping, more swimming and then having a good friend come over for great snack ( i ate them no one else) and great wine....Yummy..


WE made decision to put donovan in his crib in dylans room tonight...I am a little nervous because i will have no idea what is going on and if dylan will crawl into the crib with him and do somethign kind of crazy...HOpefully not...BUt we have a speaker thingy that will allow us ot hear what is going on in there...

BUt so far so good...WE will see...

WE had a friend over last night Michelle and that was great fun...He had snacks that Darren so nicely went out to get and just talked and talked...It was so nice...Thanks for hanging with us Michelle...

Big hugs to all my heroes out there...The kids going through these horrible times will always be my heroes forever!!!Never give up(thanks matthew I love that saying and will never give up and never forget)

love

Melissa

Saturday, July 1, 2006 10:00 PM CDT

GOod evening

Today the boys and I had a great day..With a couple minor time outs for Dylan...But pretty darn good..

I tried to work out today with both boys and that was not even possible...I think I ran 10 minutes and said forget it..I had the DVD player there, toys, everything that a kids would want to keep them busy at least 30 minutes...But NO!!...Dylan started getting antsy after the first 3 minutes and jumped around like a monkey...He got Donovan involved...They have this new game where they mimic their ability to scream as loud as possible.. That was fun...

So we all left...WE went to the park and the tennis courts so dylan could get nice and worn out...

We ran into friends and our new friend Elisabeth and all of us went to the outdoor restaurant ROckfish...They have the best Blackened tilapia ever...YUMMY...So we all had fun..Dylan played in all the fountains.. He got comletely got drenched so we walked around thinking he would dry off but not really..IT was nice just to walk around and talk...She has a son here too...Benjy is his name...He is 2...What a cutie pie..

WE went swimming, took naps ( dylan woke me up too soon:(

Then had Dinner...

The boys had another bath..This time..I had a bath with Donovan so that he wouldnt totally freak out..He freaked but he kind of stopped...But I got him good clean...One of the side effects of some of the drugs he takes is discoloration and peeling of the skin...Its kind of yucky...It makes the parts around his hands, elbows, ankles, and forehead look dirty..So I scrubbed him good...

His excess hair is falling out...His eyebrows or lashes I am not sure which keep falling into his eyes... SO I brush them and they come out in bunches...

So now both boys ( I hope Dylan included) are asleep..I am now trying to do some crafting and hoping to get more cards done tonight..HOpefully Dylan wont wake up...He gets really stir crazy and sad late at night when he has to go to bed and he isnt completely wiped out..So I rock him, lay with and then give him 15 minutes of tv time and then lights out..Sometimes it works but mostly it doesnt...

Today was a good day just hanging with the boys...THey are the light of my life...I am so glad I get to enjoy this time with them...

DOnovan is doing so well..I cant believe that he is just so perky, and playful...Even last week he wasnt this playful and interactive and just fun...He is learning so much...I am so thankful...I think the prayers are really helping...God Bless all of our children tonight...


big hugs and sweet dreams

Melissa and the Gang

Friday, June 30, 2006 8:16 AM CDT

Good morning

WEll DOnovan had his first bath last night...Holy cow that was a nightmare..I put him in the tub with dylan...Donovan started screaming so loud. He freaked out but I kept him in until I got him really clean...

So Donovan was screaming, then dylan started screaming and crying because he thought Donovan was screaming at him...THey were both totally freaking out..Meanwhile I was soaked and trying to calm both of them down..

Dylan told me afterwards, " mommy I dont want to ever do that again!"...ooops

ANywho I thought it was the cutest thing and yes I got a pic but it was with my phone so I will have to figure out how to get it off of my phone and send it to myself...

Also I have a great video of Donovan crawling backwards like a little froggy...How cute!!!

He had such a great therapy day today..I hope today is the same..He is having speech/ eating right now and later today he has physical therapy so I am crossing my fingers and toes all goes well like yesterday..

Thank you all for your kind words of encouragement...I try so hard not to freak out but sometimes i just do..Thanks for bearing with me...

Thanks mom for the extra gift...


thank you all for your support, love, faith, hope, and prayers during all of this.


Melissa ( its going to be a great day!!)

Thursday, June 29, 2006 9:16 PM CDT

Good evening

WEll I am so glad that pity party of mine didnt last very long...It really does truly suck being here by myself, doing everything my self and even though DOnovan is doing well it doesnt mean that it makes anything easier...It actually is more difficult..

Donovan is way more active and constantly needing my attention, while he still is on three times a day meds, 7 therapies a week and 1 visit to the hospital, plus I have Dylan who is also very active and hyper and needs attention at all times..Some one is always crying because I cant always be with both,,,even though I have tried many different creative techniques to include both, or do one while the other naps...I have tried it all...

Today was a good day...Donovan did well is speech/eating therapy ( he didnt gag or retch, scream incessantly, or fuss the whole time)this is a great session for him because usually its the opposite...Donovan also had physical therapy and he was amazying he was crawling backwards, trying to sit up on his own from the lying down position..He was just incredible...

I also had two doc appts and worked out, and did it with donovan with me,,,which I dont recommend doing with a semi toddler...

I didnt eat lunch. I was practically shaking by 4pm.. So I got a great dinner in me...

I think the biggest reason today went well was because I had a lot of help from a girl that is on summer break from college be with Dylan all day 9-6...Keeping him busy and also running some errands for me...Now the tricky part is what do I cut back on to pay her...

I guess looking in from the outside you never realize the struggle that every freaking thing cost something... In order to keep some of my sanity I have to pay for it and that is so hard...I am not sure how other families are able to raise so much its a such a blessing that they are able...I just wish some how some way there was the perfect fundraiser that I could put together to not make my families lives so difficult...

I dream of meeting some movie star that wants a good cause to sponser..Well that would never happen...The only time in my life I have ever been lucky is having these two boys..They did choose me...I was the one...

I struggle with the peace within me...I find my most peace in the uncondition love for my boys. I am blessed everyday I wake up and hear Donovan yelping mamamamama...How cool is that...And of course dylans snuggling right next to or rather pracitically on top of me...

SO many of you have helped our family...How do I ever express how grateful we are...How can I ever say thank you enough times to let you know that even the smallest amount has helped...Without the help me get now oh geez things would be so much tougher and they are already tough enough...Holy cow..

Well I thought this was going to be the greatest entry ever because donovan had a great day, I had help and was able to have errands run for me to the grocery store since i cant go with donovan...And now my boys are sound asleep and I have quiet...Whats better than that..?


I pray tonight for all the families just like me that have to struggle day to day, I pray for their children that are struggling to stay alive, maintaining, and kickin butt...

Every day you are tested, everyday you have to be ready for anything, everyday you wonder what will happen next, everyday you are crossing your fingers and knocking on wood, every single day for weeks, months and years...

I am inspired by my friends that go through all of this too, who have been through years of Chemotherapy and still fight like Hell no matter what...I am inspired, and have big role models as my template...THank you

Sweet Dreams tonight family and friends

love

Melissa

Wednesday, June 28, 2006 10:38 PM CDT

Ok so my pity party is over and my lights are awake...Dylan because he pooped and sure enough his brother followed in the same path.. So now we are all awake and its almost 11PM...Whoo hoo...

Anyways, thank you all so much for you special words...Thats just what I needed...I know how much I mean to these two little boys...And I will NEVER let them go through the pain alone...( unless they are like 33 and having girl problems or something, well and even then I probably would barge in and have something to say to help them through it) LOL

Thank you all so much

I must try to get my little bears to sleep...And then maybe I too will sleep this time with the help of Ambien...


Blessings to all, peace and Love

Melissa ( I lost my keys again, yes the ones I got for only 50 bucks) Can you believe the this. Thank goodness I was given a valet key...I dont think they will do the favor again...The dementia is still alive...

Wednesday, June 28, 2006 8:54 PM CDT

WEll folks and DOnovan Followers

It was a hot one today....Yikes...It was like a scorching steam bath...

Today Donovan was feeling much better...I know as the days go his soreness will lessen and he will get back to his normal happy self..I will actually be able to pick him up with out trying to maneuver my hands in certain ways so not to hurt his right side... The surgeon went through his neck and also pulled out his other line, made another inscision to insert the port and then accessed the port once..SO he has three bandages and one poke... All on the right side... I also noticed a bruise on his foot..The docs must have tried to get a peripheral IV in his foot and blew his vein. His hand also is bruised from the IV they actually did use..So he is sore and bruised but he is my little champ so he will get through it... I am still giving him as needed pain medicine...

Goodness being by your self certainly has its challenges... Both boys were up bright and early..I didnt sleep at all last night..I was so tired that I thought I didnt need any sleep aid..WEll that was a big mistake...I was up every hour...

Needless to say, today I was tired, couldnt find my serious need to chill pill and was run ragged by two little high maintenance boys. LOL...

I wish I wasnt here alone... I am the kind of person that when things get really tough and I need help I ask... ( i am not afraid to say it, I dont feel weak by saying it, its too hard for one person to handle it just is)but I dont have anyone to ask...

I almost forgot to give Donovans meds this morning because Dylan needed so much attention..He is so whiny and needy lately...

I am trying really hard not to have a pity party because I could be in worse situations... Well folks it isnt easy...Everyday I feel like I have given my absolute all and I am tired...

Everyday since October 11th I have been fighting for my childs life incessantly and I feel like I have been through a war and am scarred and need to be healed...How do you self heal when you are still in the whirlwind of the unknown...


I really hate having to work on all this by myself.. Its not a one person job.. That is probably why Duke has a policy that there needs to be two caregivers here at all times...In our situation financially, and because of other family concerns I just am unable to have someone here with me..

My sisters preemie baby Sofia is not doing well again...She has again had to stop feeds and now they are going to run more tests to see why she is unable to digest food properly..My sis has to work because her and her husband dont have the money for her not to work...So basically all day long Sofia is in the NICU by herself until my sis gets off work so she can go and see her...Her husband works the night shift and sleeps during the day and they have a 2 1/2 year old daughter that is home.. I am so sad and wish I could be in that NICU all day with her and hold her and talk to her and let her know that her big cousin is a fighter just like her...My parents are both going to Arizona to be with my sis and to be with sofia since she is by herself all day..Noone is there with her at night, in the morning when she wakes up...Its just not fair...

So I am having my own pity journaling and having one for my only sister too...

WEll I said my piece and now I am finished...

Where there is great love there are miracles...I know God Is Good and is watching us and loving us with his loving hands...I pray that I feel his presence more and can feel the peace within and heal from this experience sooner rather than later...


Thank you all for letting me go one and for reading, caring, and supporting my sweet boys and my family through this...IF I didnt have this page I think I probably would be really lost...

I may erase this because its a little bit of an overshare for me but I will keep it up for a little while...

Blessings and love

Melissa

Tuesday, June 27, 2006 11:57 AM CDT

Donovan the Great is still recouperating...

He is very sore but he is great spirits.. He was in great spirits at 5am too...Darren left bright and early for Indy and of course wanted to snuggle with the teddy bears...

Yeah for mommy

I was so tired...I am glad he was able to say buh bye for now but see ya next week...

So back to me and the boys...hanging out...It is supposed to rain all week...That really stinks for my very creative pool side agenda to keep Dylan very active...hmmm? Now what...I guess we will put together his pirate ship 100 times and knock it down a 100 times.. lol... Dylan is crazy about the pirate ship; he tells everyone about it.

And the teddy bear will watch with glee and hopefully fully enjoy his therapies, get no fevers, and nothing else...

More Updates to come from NOrth carolina....

PS: THank you so much Caroline for watching the boys for Darren and I on our Anniversary...thank you thank you thank you....


big hugs and many blessings

Melissa

Monday, June 26, 2006 3:04 PM CDT

Wow afternoon already...

Donovan had his surgery today to remove his triple lumen catheter and to have a port put in...He was a champ...

He went through it with a breeze and we were able to get home pretty early thank goodness...

He woke up very upset...I told the nurses to make sure he had his special blankie but I guess they forgot because they had it folded up at the end of the crib...Poor baby was holding on to the oxygen mask for dear life...lol

He had a great nap and now we are waiting for PT to arrive...I hope he is able to do what he needs to do today for PT...

They had to use a heck of a lot of fentanyl to help him with his pain....He is so tolerant of it since transplant...

ANyways he is doing well and tubies free...He still has his Gtube but no real dangly tubes..Its so strange...
He has had a central line for so long.

Darren and I have not been this excited since I dont know when...

He can finally take a real bath...( not for 4 days though)

I am so excited...I cant wait for his first bath...

Must go for now he is calling---


thank you for all your prayers

Melissa

Sunday, June 25, 2006 7:11 AM CDT

OK tomorrow Donovan has surgery at the crack of extremely EARLY!!!! I am so excited for him..He will finally be three tubes free...He has had a central line since 4 weeks old and this is the biggest mile stone yet...Please pray he sails through it and that he recovers like the champ he is... God Bless


GOOD VERY EARLY MORNING


How weird is this but I just looked at the time I logged in and its the exact numbers for my birthday...Thats very good mojo I think!!! lol

ANYWAYS TODAY DARREN AND I SHARING OUR 7TH WEDDING ANNIVERSARY...

LITTLE DID WE KNOW THAT 9 YEARS AGO WHEN WE MET THAT WE WOULD GET MARRIED AND HAVE TO ABSOLUTELY GORGEOUS BOYS...

LITTLE ALSO DID WE KNOW THAT OUR YOUNGEST WOULD HAVE A VERY RARE FORM OF INFANT LEUKEMIA and we would end up in North Carolina at Duke for him to get the treatment that would ultimately save his life...

OUR JOURNEY HAS BEEN FULL OF LOVE, TWISTS AND TURNS, SADNESS, LOTS OF MOVES FROM STATE TO STATE AND HOMES.

DOnovan has really changed our marriage alot and I think that he has really tested us and our faith, but I think we have both been up to each test and have come through it with an A plus...

I pray that we can continue on this path of self discovery together with faith and love and true insight into what unconditional love really is...I know we can...

Darren I love you more than words can say and I am proud that we have come this far and know we will go alot further...

Love

Melissa

Friday, June 23, 2006 10:37 PM CDT

QUick update

Sorry this will be very short...I hope some of you were able to catch the very moving PBS show The LIon in the House...It was touching, real, and so heartbreaking...

Donovan continues to do well..We had labs today and pre opp everything is ago for 6AM monday morning.,.wooo hooo I can hardly wait for that one....I am so not a morning person...

I am very excited not to have all those lines on my babies body...his porr body has been through so much and this is just one step closer to where we need to be...

Tomorrow Dylan starts Tball and I am SO EXCITED!!!! I played softball for many many years and love baseball (GO WHITE SOX)!!! ANYWAYS, Dylan starts tomorrow and yeah I think he is just going to have a great time....

On a sad note my sis in law sarah and her beautiful baby Layla will be leaving ... We will miss her terribly and all of her incredible help..SHe put the great collage together for us...

On a better note My sis' lil baby sofia is doing better in the NICU and is responding to treatment...WE are all so excited...

Thank you all so much for your prayers and love it means to the world to us...WE try so hard not to take anything for granted...THis has been a serious life changing experience and Going home I know I will be a different more aware, humbled person...

prayers to the families who deal with these same struggles everyday, the decisions, the heartache, the pain and anguish...May god comfort you and may you find peace within...

love
melissa

PS MY cell phone crashed and have lost all of my phone numbers please email them to me if I had them before...

Thursday, June 22, 2006 12:37 AM CDT

Good afternoon everyone...WE are day plus 221 I think...I always forget what day we are on...

Donovan continues to do well and really hangin in there...He is trying so hard to move and get around but his body is just still so weak...But I know in no time at all he will eventually crawl and walk and do all those things...

Tomorrow we have lab drop and pre opp appt for his port...
will update more then.. Here is a quick message that I copied from a good friend about a show that is about living the life of having a child with cancer..


I wanted to encourage you to watch an upcoming documentary on PBS (that is the channel here, may differ in other parts of the country) that chronicles the journey of 5 kids fighting cancer. It follows them over a 6 year period, and has received many awards and rave reviews for showing the strength and courage of these little warriors.

Here in North Carolina the show is airing on the UNC channel 12 at 10PM..
I watched last night and it is very moving...I would not recommend it for kids under 12....But thats just me...

You can go to this link: http://www.itvs.org/shows/ A Lion in the House and find the time that it is playing in your area.

It is a two part show called, "The Lion in the House" and should be airing this week.

I realize it may not be a super fun show, but neither is living through it.....what I do hope you will gain, as we have, is the blessing of seeing the good that will come, even out of difficult situations. We have been fortunate to meet and know many brave and courageous warriors in the past 1.5 years...and I am sure that you will come away feeling inspired after watching the show.

love
Melissa and the gang

Tuesday, June 20, 2006 9:28 PM CDT M CDT

Quick update for folks in north carolina...At 10PM tonight there will be a special on children with cancer on The UNC public channel..I believe the channel is 9..Otherwise it is on PBS....I hope it gives a real perspective on what its like to have a child with cancer....Please check it out if you can..It starts TONIGHT AND ENDS TOMORROW NIGHT...!!!!


Fianlly able to get to the computer to update on todays clinic visit...


WEll for the 5th week in a row Donovan has done absolutely fantastic...HIs counts are great his liver enzymes labs are going down and he is continuing to develop...

We couldnt be happier...

We go in friday for our pre operation appt to talk about the port surgery.. MOnday he gets his port...He also stops his antibiotic soon. Once he gets his port the docs dont want to access it for atleast a week so that it can heal..SO we wont be doing labs for atleast 10 days...

That scares me...but I think all will be well...He really is looking great and ready to be back with his friends and home in Indianapolis...

Dr K even mentioned home today and she said possibly beginning of August...I am excited yet very connected to this place as it has become a home for us for so long...Its familiar, and I love being amongst the other families and the kids are just so amazying

WE are of course required to come back every 3 months so we will be again before ya know it...

WE have a lot of friends back home but we dont have alot of connection with our actual community (new whiteland) back home so it will be strange just walking back into our house with nothing but our trailer full of stuff...I dont even think folks really even know about us there so that will be strange..We will get home and all will be quiet...

I am excited to see our friends, our very good friends back at Riley...WE have missed them dearly and I think Donovan will be very happy to see them...

PLease continue to pray that Donovan stays well and we are able to stay on track...SO many things can happen between now and then so please pray he remains stable, happy, developing, leukemia free, and 100 percent donor....

thank you so much angel Nickey for your very special gift to Donovan he loves it...It was just perfect...Thank you so much


love
melissa

Monday, June 19, 2006 9:11 PM CDT

HOw Fun ANgel NIckey sent DOnovan a push and pull toy...ITs his favorite character...Thomas the tank engine.. thank you thank you thank you..HEre are pics below of the excitement...


late evening to everyone

This weekend was great...Donovan was flirting with a fever but nothing at all sunday or today...Yeah

My sis in law and my niece came in today to help out for the week.. I am so glad I could really use the company and help...PLus I get to see my niece and sis in law...

Asking for serious prayers for my lil' siss' preemie baby...Her baby might have what is called NEC and can be terminal...We are all very scared for her and have been praying so hard that all will be with Sofia and that she her intestines and stomach will mature enough and the bacteria will go away with antibiotics and IV TPN ( food)

As for our family...We had a great fathers day..WE went to a near by beach and had a picnic...Dylan loved playing in the water especially the waves...He thought that was the coolest..He also started swimming lessons today...UNfortunately he was the child that didnt listen in this group...oooppss...But he will do better and eventually will swim like a champ..Also his first Tball practice is saturday...I am so excited but I think I will be my self and I am worried about that...Its hard to try and manage everything by yourself...Nonetheless we will be there and He will have a great time..

Tomorrow is our long clinic day and hopefully we will find out more about Donovans labs and liver functions...I really hope they did not increase...

God bless our children struggling, maintaining, and fighting like crazy to live....

Love

Melissa

Saturday, June 17, 2006 9:43 PM CDT

HAPPY FATHERS DAY!!!!

Day plus 212...We are still treking with minimal complications this week...We are so grateful and rejoicing in Gods mercy for the past month has been pretty uneventful ( besided some of the stuff that has been going on forever, retching, gagging etc.)

Donovan really is showing more and more of his personality and it is just the most exciting thing to be able to witness.. He and Dylan kind of play together and Donovan just loves it so much..Donovan even teases Dylan and just pushes his buttons a little too...He can be a little stinker just like any 1 1/2 year old... We think its so great to see him acting "normal"....What ever that means of course...

This weekend we lost our only key to our car...that was a total nightmare...We had to have it towed to the dealership and have a new key made for it...The keys are so expensive because they have to be specially programmed to your car and all sorts of jazz but the gentleman that we dealt with knew us from us trying to sell our car and knew our situation and was very kind to us not to charge us the 350.00 dollars it would have cost.. Darren and I both were so happy since there was no way we could afford that...So 50 dollars later we had a new key...WE had been using the valet key for the past 10 months...And now we acutally have our keyless entry key back..Its so nice just to push the button and have the car unlock...Geez...

Anyways Donovan gave me a fright last night when he started flirting with a fever. It was mild at 99.3 but nonetheless I was starting to get worried...But he is a champ and was fine the rest of the evening last night..yeah


Happy Fathers Day to Dylan and DOnovans special Daddy Darren...Darren has really been so helpful throughout this whole ordeal and has sacrificed not being able to be here so that he can work and enable us to stay here in NC...That is true sacrifice and unconditional love...

Happy fathers day to my DAD...Dad I love you so much and appreciate so much your help, and caring through out the past year and a half and of course that last 30 and half years...(yikes I am getting older and older)
...your love is unequivocable and I love you very much...Thank you...

Darren Happy fathers day....WE love you very much...

Happy Fathers day to all the dads out there..I hope you all have a very Blessed Day...

Melissa

Thursday, June 15, 2006 3:50 PM CDT

Hello Hello

Nothing much to update today so far...Donovan continues to have is gagging and retching moments due to the increase in mucus but he gets through them like a champ...Its just sad that they can last a long time...

The itching has calmed down a bit from the atarax Dr K prescribed tuesday..I am so glad. I thought the poor baby was going to scratch himself til he bled... So that is a great thing..THe bum side is that it makes him sleepy...So we have to work around his therpay times...

Another great Update is that Darren came in early this morning to join us.. I am thrilled as well as the boys..They have missed him terribly...


I am definately going through withdrawal from all of my favorite shows..But on the upside I wont be watching so much TV and wont have to worry about being home in time to catch a show...


Thanks to everyone who help support our family continually..The prayers, messages, cards, packages, donations have really been a blessing to us and we are truly grateful...
God BLess

love

Melissa

Tuesday, June 13, 2006 7:23 PM CDT

Sorry this will be quick I am so tired from being at clinic...

Donovan is a champ...His counts are great...BUt his liver enzymes went up again they are in the 300's.. Dr K isnt worried at this as of now since he has done this before...

He has some Gvh so they are starting a new med Atarax (sp)to help him stop itching...They are also going to try him on a oral (via gtube) version of Protonix to see if we can get him off of it since we really want to get him a port...If all goes smoothly he will get a port in a couple of weeks...That is good news...

He also has some sinus issues so they are going to give him a few doses of rocephin...He gets so much mucus he cant swallow it and he chokes on it and then gags and retches and its just awful..So she is going to see if rocephin will help...It certainly cant hurt...

Darren will be coming here soon I hope...My Dad leaves early tomorrow morning and I will be all alone again...GOsh...Thank goodness for my busy boys to keep me company...

will write more later need to lay down for a little bit ( even though its already late)

love
melissa

Monday, June 12, 2006 9:18 PM CDT

Good evening

Geez I dont even know what to write tonight...Today Kaylee was laid to rest and Zoe will be next...That is really sad...I have been praying for their families all day today and just hoping that they will remember how strong, brave, and truly inspiring their girls were and will forever be in our memories and hopefully dreams ( I love to dream I used to Dream of my grandmother and the next day I always felt so much better..I knew she was watching out over me it was so comforting)...


Donovan is doing well...He has a bit of sinus problem...This problem unfortunately leads to lots of gagging and retching since the mucus is really hard to swallow...When I vent him I just get mucus...Its really gross...Sorry for the graphic details...He is so consitpated too...I swear something is wrong with his GI system...I dont know what but its not normal...He is in pain and uncomfortable...I had to help him poop a little bit today and it was so sad to see him in so much pain...His poor belly...Plus I think gagging and retching probably exacerbates his esophogitis and reflux problems...

Hmmm..I dont know..He is such a mystery...

My little teddy bear is a jibber jabber little thing...He just jabbers all day long..Its so cute..TOnight Dylan told him to be quiet because he was watching his movie and donovan was too loud...I just laughed....

TOmorrow is clinic day and I sure hope donovans liver functions havent increased...I also hope all his other labs are good too...His potassium is usually a little on the low side but not too bad...


I HAVENT FOUND THE DVD PLAYER...I THINK IT DISAPPEARED OR I LEFT IT SOMEWHERE AND SOMEONE TOOK IT... Who knows... Sorry mom..I will look for another some how...I sold mine on ebay and that was cool because it doesnt even work...I told the person who bought it and they didnt even care...So that was cool...they must use the parts...

ANyways, the boys are ok..Dylan is on an antibiotic for his ears...They are really sore and red...Fluid wasnt seen but he has really bad problems with his ears and we didnt want to take any chances with him being around donovan...Even though Donovans immune system is normal its not Like you and I "normal" so we still have to take special precautions...

WEll I will update tomorrow and let y'all know what is going on with the cutest teddy bear ever....( I am so biased its sad) POor Donovan still doesnt move he is still so weak and its so hard for him to move.. He is great at sitting though....yeah...He doesnt lean, crawl, or walk...It will be awhile before he does those things but I think he is getting stronger everyday and that makes me so happy...

well God bless our children tonight and their families

love

melissa ( watching season 1 of greys anatomy because I am going through serious withdrawal)

Saturday, June 10, 2006 6:41 PM CDT

Day Plus 208 I think...I have seriously lost complete track...Tomorrow will be exactly 7 months...Boy I thought we sure would be home by now...

The way I measured was by when certain movies would be released..I thought we would definately be gone by when the Davinci Code came out and Certainly that cute new movie about Cars for Dylan...I just dont know when we will go...

Clinic this morning donovan has a very large rash all over his body and I noticed first under central line dressing..But I thought it was irriation..Well its everywhere and definately looks like Gvh ( graft verses Host) so now we are back to crazy steroid creams...No wonder he has been so clingy and uncomfortable...

Today has been a good day...I got a great workout in and it really calmed me...And a few of us transplant moms got together to make cards..That was the most fun...I just love doing that and especially getting together with other moms...WE dont really have time to get together since we are all so busy with our kiddos and their meds, appts, and therapies...So this afternoon was really nice...Dylan got to see the new movie CARS and loved it....What a sweetie pie

I am glad this week is almost over and another one is about to begin...Its been a sad heartbreaking week...

Thank you all so much for your support, messages, love, hope, prayers, donations, care packages, and the gift of caring...

PS...I havent found the DVD PLayer ( its my moms as mine broke some time ago) Yikes...My Blockbuster movie in it ( yeah had to pay that fine because they send you to collections) which I dont need since we are closely there with Dr Bills...Yikes....

God is with us through all of this and I am trying to find my peace in the midst of all the struggles and sadness...

Thank you all so much for caring for our family..Just when I am having a sad day I come to the computer and get reinspired...Thank you...

Melissa ( about to craft and hang with my teddy bears) its hot here...I am getting so brown from the sun.. THe sun here is much different...I wear like 30 SPF and am brown...I think I need to up it to like 50 SPF...Holy Cow...Its a hot one today 96 degrees... Dylan loves the pool so we are always there...THank goodness for the styles of hats and big oversized sunglasses...My favorite things....

Friday, June 9, 2006 1:23 PM CDT

Quick update:

Donovans labs came back and his liver function labs are up from tuesday by quite a bit but not completely out of control. So We are still in the wait and see mode...WE will see what happens tuesday go from there...He isnt on as many meds so its a little strange..But he has done this a few times in the past so we are just be cautious.. Hes a champ its probably nothing...

HAPPY BIRTHDAY TO DONOVAN HE IS 18 months old today!!!!

WOW a year and a half exactly....

Today we dropped off labs and I still havent heard back from the clinic so I hope that means things are ok...Or atleast stable with his liver functions...Donovan had a good eating therapy today...He actaully didnt cry the entire time...HE also let Jen play with his mouth just a little bit...That is a big improvement...SHe couldnt even get near his mouth at all for the past couple months...
HE has PT later this afternoon and hopefully this will go just as well...

Today is also a sad day as our neighbor Zoe earned her angel wings this morning...Although, I didnt know her or her family all I have heard from friends is what a kind bright, faithful family they are and what sunshine ZOe brought to people everyday...

Even though we do not know her or her family well it still hits hard to see a little one pass. May the comfort of prayers, and Gods love be with them as they endure the agony I know they must be feeling... Zoe is in perfect healing and is no longer in pain and is Dis-ease free...
PRayers and hugs to you all...
www.caringbridge.org/visit/zoebachman

Love

Melissa ( my heart is aching for the Krause family and BAchman family and hope they know that our prayers are with them everyday and that their children will be angels of God and touch the spirits of the kids still struggling)

PS: Bye Bye Kathy and Dana I am so sad you all went home..But I am so excited that Braden is doing so well that you
get to go home.. But I will truly miss you guys... Cant wait to see you when you come back for check ups... Big hugs to you all and especially your little teddy bear...

Thursday, June 8, 2006 7:56 AM CDT

Good Morning

WEll I must say the past couple of days have been sad but we are also rejoicing...

Donovan had a great appt with dr k and she is just thrilled with his progress...His counts were great except for that his liver functions were high again... Dr K. said she is not worried because he has done this a few times and they go back to normal...So we are going to start drawing labs more often to see if there is any kind of trend...

Dr K also talked about Donovan getting a PORT ( it goes under the skin and then is accessed with a needle for blood draws and infusions) most kids get these because they are on fewer meds, fewer infusions, and they dont need more than one line...RIght now Donovan has a triple lumen...Three access points... So A port is great...But he is still on IV meds twice a day so I am not sure how that will work...

The cool thing about a port is that HE CAN HAVE A REAL BATH!!!!The POrt is under the skin and isnt exposed to anything... ITs pretty cool.

Donovan continues to bless us each day with his sparkle, and mama, baba, yaya, and all sorts of new babbling words...He is just such a joy...Dylan loves to help out with donovan too...Its his job to turn off meds when they beep, and to hold the syringe for donovan to burp through his Gtube, and sometimes he gets to flush Donovans Gtube with water...He thinks that is really cool...Dylan hasnt started swim or tball yet and I am so excited for him to start...I wish it was sooner...


more updates later...Donovan has OT in a minute or two...

love

Melissa

Tuesday, June 6, 2006 9:50 PM CDT

Good Evening

Its late and so I am going to make this quick. I will update more tomorrow..

Today our dear dear friend Kaylee who just turned 2 May 4th earned her angel wings this morning...

Her family was on 5200 the same time we were and we all became really close...Kaylee was literally on her way home when the docs noticed fluid around her heart like Donovan...Her symptoms persisted and she ended up in PICU where she was loved and looked after by her family...

Our hearts are saddened and heavy with grief with her passing...WE know she is now healed perfectly but here in the physical we all feel the grief and pain without her here...

My prayers tonight for the Krause Family and for all of the families facing the same struggles, and many other struggles that continually test our faith; there is a higher power in charge with only Good intentions and perfect love and peace in the end...

Kaylee is now an angel watching over all of our children and we couldnt be luckier...God BLess you Kaylee you will be missed but never ever forgotten...

www.caringbridge.org/visit/kayleekrause

Please also pray for our neighbor here at Alexan Farms Zoe she is in PICU in need of a miracle...HEr family has endured so much and prayers and messages make their days brighter...

www.caringbridge.org/visit/zoebachman

love

Melissa

Tuesday, June 6, 2006 8:32 AM CDT

Good Morning

I just got back from Dropping off BLood to the clinic...WE dont have to be there until a little bit later thank goodness...I still have a couple errands to run...

Today is our long day at clinic and I cant find our portable DVD player...I am freaking out...#1 Its not mine ( its my moms, #2 the hours go by so much faster when you have something to keep you occupied and #3 Donovan loves baby einstein and it always calms him down... For some reason whenever he gets infusions on tuesdays he gets restless and uncomfortable and wont sleep but baby einstein has been our blessing... SO BIG BUMMER....

I keep asking myself, " WHERE THE HECK ARE YOU DVD PLAYER caring my blockbuster movie that they will charge me 50 dollars for not returning....?" How incredibly annoying not being able to find anything... "stress Dementia I dont recommend it....lol"

I think I lost my mind with it along time ago...LOL...

Anywho, DOnovan had a great night last night...He finally slept through the night...He even let us sleep in a little 7:30am... Yeah!!!

PLEASE PLEASE PRAY FOR THE FAMILIES HERE STRUGGLING ALONG WITH THEIR CHILDren FIGHTING FOR THEIR LIVES....

I DONT EVEN WANT TO IMAGINE THE GRIEF THAT AILS THEM EVERYDAY...BUT I KNOW THAT GOD IS WITH THEM THROUGH ALL OF THIS AND THAT THERE WILL BE PEACE IN THEIR HEARTS, COURAGE, LOVE, AND STRENGTH HELPING THEM THROUGH THESE EXTREMELY HARD TIMES...

www.caringbridge.org/visit/kayleekrause
www.caringbridge.org/visit/zoebachman (my next door neighbor here at alexan farms)

Love and blessings

Melissa

Sunday, June 4, 2006 8:30 PM CDT

Day PLus 190 and something...I have lost track...

Donovan is doing pretty well...No real scray things over the weekend...He had his mickey BUtton put in and that caused some pain friday night and saturday night but I am hoping tonight will go much better...

He cried in his sleep for hours friday and saturday despite the pain medicine I gave him...I kept wondering why he was crying and of course I kept getting up to see what was wrong but he was asleep and crying...So I changed him, vented him, and hoped he would just go right back to sleep..WEll he did but he kept crying...So I was up all night friday and yesterday night...I am really praying I get some sleep tonight...friday night I finally moved to the couch...

I think he might have a little cold but I am not sure...He has been coughing and choking on mucus...Who knows...We will see Tuesday when Dr K can see him..

OTher than that we had a good weekend...Dylan made some new friends and got to see a movie with grandpa and of course we hung out at the pool when it wasnt raining...

I am very hopeful that Donovan has finally turned a corner but I dont want to actually say it out loud because there have been so many times that we have thought that and somethign else has happened...So we are taking things slow and day by day...And really enjoying the moment...He is our precious teddy bear and pure joy to be around...Dylan is fearless and beings absolute joy to donovan it makes a mommy proud to see her kiddos interacting and having fun together...

Please continue to pray for our friends near and far...

God Bless

Melissa ( hoping there is somethign good to watch on TV)

Friday, June 2, 2006 8:07 AM CDT

Check out our fundraiser Picture of DOnovan its not quite half done...But you can see part of his face..PLus new music....Yeah... I love the music part..

Good Morning
Donovan did great with his mickey button..It truly made me feel like I was going to puke watching them jsut rip the one he had in right out but this one is much better...I have seen so many procedures but this one reminded me of when they took the sutures out after my C-section with Dylan...I curled up in the fetal position and was just in pain...That really hurt. The lady just ripped it right out...YIkes....ANywho my boy is a champ!!!

The Urology surgeon also took the opportunity to check his testes and make sure everything was A. O.K. and it sure was...YEAH YEAH YEAH!!!
Donovan is in Eating/speech therapy right now and when he is done he goes into pediatric surgery to have his new mickey button put in..I guess the surgeon wanted to be the one to put it in. Its still an easy procedure and hopefully wont take forever...

Yeah we dont have to draw blood today. But we will make a pit stop to the clinic just to be seen... I sure hope today is a short one...

Donovan didnt sleep at all last night...And of course neither did I...He is much more active when he sleeps now and he unhooked his feeding tube...Of course that means he was soaked, the bed was soaked, and all of his blankets including is all time favorite fringe blankets...Too bad Dylan was hogging the other fringe blankets that our friend Jenny made because I think that would have helped him go back to sleep..But no he was up from about 2-6 just fussing and crying...Then he slept an hour and half and woke up early once again...

I am so tired...I was just talking to my sister about how I dont miss the days of waking up every 2 hours to feed...I am funny I need alot of Sleep...Otherwise I am just beat the whole day...

ANywho I must run becuase it is getting really close to our time to leave...And I need to get DOnovans things ready just in case we have a long day....

Thank you all so much for all your prayers, messages, notes, cards, financial help, love, and hope for our precious Donovan...

PLease remember to pray for our friends that are still struggling and fighting for their lives Kaylee and Zoe

www.caringbridge.org/visit/kayleekrause
www.caringbridge.org/visit/zoebachman

love

Melissa mom to the best boys ever...

Wednesday, May 31, 2006 8:45 AM CDT

Check out our fundraiser Picture of DOnovan its not quite half done...But you can see part of his face..PLus new music....Yeah... I love the music part..

Good Morning

WEll Yesterday was a long day but nothing but GOOD NEWS for our CHAMP DONOVAN..


I thought the day literally was just going to be awful.. I didnt have a good start at all..I dropped Darren back off at the airport and had to say goodbye..He isnt sure when he will be able to come back...Which is a good thing because he has some work.. But sad for me...Alone again...

But my dad came in to help me out so that is good...!!!

So I am not really by myself but it takes a lot of time to deal with both boys so we are always exhausted by the end of the day..

Donovan went to clinic as normal and got Pentamidine IV...This is something he gets once a month to help with his immune system... Well he got it and all his premeds because it does weird things to the poor kid...

He vomits and gets very congested and screams.. Well this time was no different he started to just scream and cry and go crazy even though he had Benadryl, and Zofran..He also was vomitting and gagging...(vomitting for him means the dry heaves, yuck)

The day definately had a great great turning point...Two moms and their kids were at clinic for their 2 yr and 3 and half year visit...I have met them before and otherwised talked with them online but there they were in person...What a great rest of the day...

Dr K came in and saw us and had nothing but great news for us... His counts were great minus a small dip in his potassium. Donovan no longer has to receive pentamadine...We have been taken off of vorconizole, and now we are on once a day blood pressure medicine...Yeah..After 7 months almost of terrifying circumstances with donovan I really hope we are turning a corner...

But the Best NEWS is that his Immuno studies came back from his 6 month studies and they are PERFECTLY NORMAL!!!!! He has his new immune system working perfectly now.!!!!

Yeah I am so excited...Mostly because we just got off of a lot of restrictions.. Donovan can now go out to eat in open outside areas, go to stores when they are not busy without a mask, and basically do some NORMAL STUFF!!!!

Of course, using common sense is a good thing, obviously dont go near sick people, or a lot of people, wash hands like crazy, all the stuff you should do to ensure he wont get sick...

The donor cell studies have not come back yet...So we hope those are good..Donovan could have a great immune system but if the donor cells come back and he has some of his own cells that is NOT GOOD!!!!! So I am a little nervous. Dr K is very positive and thinks it will be just fine...

This week has marked the third week out of 6 months that Donovan has done well...3 weeks out of almost 7 months...Dr K still isnt entertaining any going home ideas...:( I think she knows Donovan likes to throw ya for a loop sometimes and you just never know when that will be... His feeding has to get better and we have to continually see his progress for more than just three weeks...3 weeks out fo almost 7 months is great but not a lot of time..So she is being cautious..She has great intuition and I will go along with whatever she says..she is amazying the way she can look at a child and know what to do..Ask any parent that has her for a Doctor and they will tell you the same.

Most folks would not see their childs immune system jump to almost a 100percent normal but because of donovans isolated relapse he was taken off of all of his immuno suppressant drugs so that the new cells would kill any dormant leukemia cells...I sure hope that is working...

Dr K also would like to see a little GvH to know that the new cells are working and killing off his old cells but so far his weird rash is probably prickly heat except for some red areas that I am putting protopic on...But that still isnt much...She said to expect some rash but not to worry...

OK so HOW ABOUT THAT UPDATE....I know that was so long but there are still things I want to write but Donny's eating therapist just got here so I will go and occupy Dylan so he doesnt get in the way ( yeah right he loves getting their attention)

Donovan does not eat anything at all nor put anything near his mouth and Dr K said that it could take a year or more for him to even begin to try anything...YIKES THATS A LONG TIME to be on 20 hour FEEDS!!!!! But we are hopeful and we have a great therapist that works with him twice a week...( God BLess her it must be fustrating to work with a child for so long and not see any progress )


PLEASE PLEASE CONTINUE TO PRAY FOR OUR FRIENDS HERE THAT ARE FIGHTING FOR THEIR LIVES, KAYLEE AND ZOE, AND ASHLY..THEY NEED YOUR PRAYERS OF HEALING AND COMFORT.

www.caringbridge.org/visit/kayleekrause
www.caringbridge.org/visit/zoebachman


Please continue to pray for our new little addition to the family my niece Sofia for her continued strength to get better and out of the NICU and home with her family...
love

melissa ( feeling better this morning no tears)

Tuesday May 30th 9:00 AM CDT

SPecial COngratulations to my little sister today. Her Pic is before Donovans...

Please say special prayers..She is not able to breath on her own or eat and is on bypap and NG feeds and we are hoping that she will perk up soon and mommy Valerie will be able to soon be close to her precious new baby girl....

She just gave birth to a beautiful little girl Sophia May Sprenger weighing in at just 3 lbs 15 oz via C-section... SHe is little Sis to Madison 2 yrs old...we have high hopes for out latest little addition

My sister had complete placenta previa and was hopsitalized yesterday in Tucson, Az...

Her due date was my birthday july 11 th but the little girl wanted to come very early...

COngrats valerie we Love you... Our prayers are with you and your baby and your family.



On the Donovan front he is doing well... He is still gagging and retching pretty much throughout the day and we are not sure why..He also has this funky prickly heat rash that keeps coming and going. ITs really strange..Its on his belly his feet, shoulders, and parts of his legs...I am not sure if its just heat rash or GVH ( graft vs host) but of course I hope its just heat rash...Donovans counts over the weekend were great and steady...What a champ...Yeah...

Thank you all so much for all your prayers, messages, cards, doantions, support, love, and hope four our precious Donovan and our family..

Prayers tonight for our friends near and far I love you guys...BIg hugs and big prayers coming your way

Please SAY SPECIAL PRAYERS FOR OUR DEAR FRIEND KAYLEE KRAUSE AND HER FAMILY...SHE HAS BEEN IN PICU FOR A LITTLE WHILE NOW AND IS IN NEED OF GODS MIRACLE...SHE WAS OUR NEIGHBOR ON 5200 AND WAS PUT BACK ON 5200 WITH THE SAME PROBLEM WITH PERICARDIAL EFFUSION LIKE DONOVAN HAD AND HASNT BEEN ABLE TO LEAVE SINCE...SHE IS A BEAUTIFUL GIRL WITH A LOVING FAMILY THAT WE HAVE GROWN TO ADMIRE AND LOOK TO FOR STRENGTH IN THE MIDST OF ALL THIS SADNESS...

www.caringbridge.org/visit/kayleekrause


Love

melissa

Thursday, May 25, 2006 10:14 PM CDT

he y'all ( lovin' the twang here)

Well a lonely day with me and the boys...My mom left this morning and we are all sad and going through grammie withdrawal...

We tried to stay really busy by taking walks, going to the pool, more walks, ride to wendy's drive thru, then nap for dylan, then PT for Donovan, and then I made cards, we watched movies, more walks, talked to some friends, dylan played with Braden and Ashtin for a little bit, and then back home, baths, snacks and hopefully bed...

Lots of fun here...

Donovan was kind of tired today, not that you would guess by his BIG hugs grins...But he was pretty tired during PT and after....But he is getting stronger by the day and we are so excited...

Darren comes tomorrow by AIRPLANE because of a special friend and reader...I cant even begin to thank her...He wont have to make the 26 hour drive in three days...Dylan is so excited and Donovan will be so glad that he doesnt just have to hear daddy's voice through the cell phone.

Well its late and I just wanted to say hello and thank you to all that have helped our family..Times are so tough and its just indescribable...It really is hard and at times I am not sure how we will make it...But I am in peace knowing that there is a plan for our family even if we have to make some really hard decisions...

God Bless our kids tonight...

love

Melissa and the gang ( American Idol was very entertaining and yeah for the guy winning)

Wednesday, May 24, 2006 2:04 PM CDT

Yeah Back from Clinic!!!

Donovan gets a super dooper A so far....He is doing great..His heart and lungs are great!!!!

They drew all his labs for his donor cells, immune system, and all the others that i have no idea what they are...All I know is that his HGB today was 9.9 and it will probably be lower since they took so much blood from him today..Holy cow was it alot..there were like 10 different colored syringes and big ones...

Those tests come back in a week to two weeks..( sad I love fast results) but nothing is fast in the business of cancer so we will continue to be the best patient inpatient people we can...lol

Donovan had a gagging morning and then got over it and had a great day!!!

WE dont know why he is doing this but we are going to try some other things with his feeds..He is still not getting 100 percent of his calories but his weight is stable and is actually up so we arent changing the amount just the way we are going to give it..We are doing continuous for 14 hours and two bolus feeds one AM and one PM...I hope it works!!!

WE also weaned him down to two doses of methadone instead of three today...yeah I hope he doesnt go crazy...

Next week if all is still good we will have a lot more changes and less drugs!!!! Yeah...I never thought the day would come when he was going to be on less meds...But Its just around the corner..

Friday he will have his Gtube changed out and a mickey button put in..SUpposedly this is a simple procedure (crossing my fingers)...and then next week we do more testing...

Thank you all SO MUCH for all your kindness and generosity to our family especially for our special Donovan warrior...He really is doing amazying considering all he has been through and I am just so blessed that we have this page to communicate his story and the absolute wonderful folks out there that care about us...

WE have been here so long and Dr K still is not even thinking of a date to go home..I am sad to hear this but I know its for Donovan to get the care he needs to overcome this nasty beast CANCER... WE have been here for 7 months...I just didnt think we would be here this long and definately didnt prepare for it...Shame on me I guess...ANyways, I am so blessed for the support from the families here especially my group of 5200 moms..I love you guys and if it werent for you I would have had alot more melt downs and it means alot to me that you have also embraced our family...THANK YOU ALL SO MUCH Love you all and your very special families and your little heros... xoxoxo

Please say extra prayers for the kiddos struggling near and far tonight...Some need serious miracles and others need comfort, please pray and know that our children are so precious..Dont forget to hug your kiddos tonight and tell them how special they are...

love
Melissa ( yeah for American Idol and House MD tonight) oh and my moms yummy cookies that I will eat a ton of and regret it tomorrow when I have to work out like an hour longer to burn it all off...) :(

Monday, May 22, 2006 2:03 PM CDT

QUick update

Donovan is requiring my attention so I will type fast..

Donovan of course is still gagging and retching but I have no idea why..So I turned off his feeds and then 20 minutes later he is fine..We vent him and do all those things which seem to help but he just doesnt seem completely himself...I had to wake him up this morning.. He usually wakes me up...But he was crying in his sleep all morning. I kept checking on him but he was asleep..It was weird..I hate when he cries in his sleep...(*so sad)

ANyways Dr K said to just wait it out til tomorrow...He may just get through it..I thought that is what she would say.. Thats why I was hesitant to email her or call clinic..BUt my instinct said call so I did.

WE will see tomorrow..

We signed Dylan up for T-ball and Swimming lessons today.. It cost alot but the poor kid I feel always get jipped so I am skipping my crafting stuff for awhile..Little Guy will have so much fun..I cant wait to watch him...He has never done anything like this so he is just going to love it...

Tomorrow Donovan has his long long long day at clinic and I will update tomorrow as to what the heck is going on with him and hopefully some good results from his 6 month studies...

Many thanks for all your prayers, cards, messages, love, hope, gift cards, donations, just everything that makes our lives here more pleasant...It means so much to our family to have people to help us...We are trying so hard to do what is right and it is just Really Hard...I havent been home since Oct 10...Heck I forgot what it was even like..I wonder if when I got home I will remember how to get to places...Who knows..Home seems so far away..But then again, maybe it wont be..The uncertainty is really agonizing..

Please say prayers for all of kids that are REALLY struggling for their lives, maintaining, and still fighting...Their are so many out there and it just breaks my heart to hear of another little child relapsing or having to be airlifted for organ failure, and transplants not working..Its so hard to watch your frail kids go through so much. I know god has a plan for each and everyone of us and I pray that we all find peace in the midst of our chaos...Amen..

Melissa

Sunday, May 21, 2006 9:51 PM CDT

Good evening

Wow what a gorgeous day here...95 degrees..Hot hot hot..

Donovan is still gagging and retching...POor baby was running a low grade fever this morning 99.5...But he was so just uncomfortable I stopped his feeds completely..He just woudlnt stop gagging...ALso half digested formual was coming out of his Gtube area which means he doesnt feel good..

So if he keeps it up or spikes a temp we will go to clinic tomorrow...I dont want him to get dehydrated since I stopped his feeds so we will see what happens...I had to slow his feeds down now all the time...

However, the little guy was in pretty darn good spirits today..We did our usual, I worked out, dylan and donny played with grammie outside the workout area and then we went on an outing to the outside mall before it opened..WE still cant be around people so we made it to the mall about an hour before it opened and there wasnt hardly anyone there..

Good news, DOnovan held up a sippy cup to his mouth and drank from it for the first time in months today,..,His OT will be thrilled...

Dylan went to the bathroom by himself without us even knowing..He said he just had to go...SO he went...WHAT a big boy..We were daring last night (grammie) he wore underoos to bed and didnt have an accident at all..That is 6 days without an accident in the night..But he wakes grammie up at 2:30 to go potty...SOrry grammie..You are closer to the bathroom than I am...WHat a big boy..I am so proud of him...

Tomorrow we are going to sign him up for TBALL and swim lessons... I am so excited...He is just going to love it...!!!and granpapa will love it too...Dylan is a natural he throws so hard he hardly knows it..But I will tell ya my eye knows it..He threw it so hard and I wasnt looking and bam right into my eye..I am lucky I dont have a black eye to go with the rest of my bruises...What a cutie...

WEll I thought I woudl get this in before Desperate Housewives Finale..!!!

I am going to watch iteat yummy cookies grammie made and craft!!!

Donny is already alseep poor baby just doesnt feel good...

I hope he makes it through the night without a fever... GOing to the bop room at 2am was not fun!!!

God BLess our children tonight

Melissa

Saturday, May 20, 2006 10:15 PM CDT

ANother Day post transplant

190 days post

Holy Cow

Donovan is still gagging and retching alot more than normal..He has been doing it all morning and early afternoon..His labs looked great yesterday so we didnt have to go in...Yeah!!! But this new gagging is nervewracking...

But other than that he is doing great, he is playful, and laughing and bright...Its a joy to be able to be here with him during this time...

I slowed his feeds down back to 40ml/hr because of his gagging...Which means his feeds run for 20 hours...We get to haul around the pump everywhere we go.. Yeah!!!Not that we really go anywhere but its annoying...THe tube gets caught the pump beeps constantly, its annoying...

WE hung out most of the day, running errands, riding bikes, watching movies, hanging out at the pool..IT was 92 today and tomorrow is supposed to be hotter...The water is so cold though I cant bear to even put my feet in...BRRR...

SO I dont know poor dylan will have to hang by the sidelines...I am going to try and get him into swimming classes this summer..It will be so fun for him and good for him too..Dr K said he could go to summer camp and take swim lessons...yeah.. Swim lessons are easy to find a CAMP on the other hand is a nightmare...HOpefully we will find something for him to do over the summer to keep him stimulated and entertained...

Prayers go out tonight to all the families that are struggling because of their loss, theirs children fight to hang on, and the daily worry and concern...

GOd Bless

Melissa

Thursday, May 18, 2006 9:17 PM CDT

Hello DOnovan Fans

WEll the past couple of days have been pretty darn good...
The past two morning however Donovan has started to gag and retch and not able to calm himself down from it...For some reason he just keeps doing it and then it stops after about noon...Its really strange..

He couldnt have his speech/eating therapy because he had a retching attack but she came back today for a little bit and He did ok...

He had an attack in front of another family...Oh I just hate that I dont want them to freak out...We are so used to it we just calm him down and go on but outsiders might get really freaked...I sure hope they werent...

ANyways we have been hanging out and trying to get some good play time in with the boys...Donovan has had a marathon of therapies so he hasnt had a break for the past couple of days and tomorrow he has two more therapies...Geez the kid is always in therapy or clinic...

But he is making such strides its amazing...I put some pic up of him actually weight baring on his legs.. He has never DONE THAT BEFORE!!!!!!He still cant crawl or stand or roll alot but he is getting so close to maybe crawling...In a couple of months I think he will start crawling...yeah yeah yeah yeah!!!I am just rejoicing for all of our blessings...He truly is just my hero and DYlan boy does he learn quickly... POtty training is going so great with him.. The only hurdle with him is that he cant get his pants off very easily or his underroos he has to take them completely off and we have to help him do it...oh well he is getting there and that is a minor thing I think...

Please continue to pray for our special friends near and far...The families here are amazing and the spirit of the children are just nothing but magical.. Please KEEP Josh in your prayers as his leukemia has come back and he is not strong enough for more chemo or a second transplant his parents are taking him home tomorrow via an ambulance to be with family...PLease also continue to pray for our dear friend ALexia who is back on 5200, adn coop who is still recouperating from his visit to 5200 last weekend... Also Alexa who is from our hometown that relapsed after a matched bone marrow transplant from her brother last year...

Our lives have been so changed and I know God has a plan but this experience has been very tramatic for our family and for others and it just seems neverending...

God Bless tonight our children

love
Melissa

Tuesday, May 16, 2006 9:38 PM CDT

Hello everyone

I am finally able to get to the computer...Lots going on today...

Donovan starts his 6 month studies next week...WOw I cant believe its been so long....But then again it really has felt like an eternity being here... Gosh I must say this whole experience has not been easy...

Not that I thought it would be but GEEZ!!!!! Sometimes I feel like, "give a girl a break"....Please...!!!! Our friend Noelle who is also a transplant patient told her mommy that she doesnt get any breaks...Well boy did she hit the nail on the head!!!

Although, Donovan's past six months have been probably the hardest months we have had since he was diagnosed 15 months ago this part of last week and this week he is doing JUST GREAT!!!!

Last week was a FIRST- We were only at CLINIC TWICE!!!! YEAH YEAH


This week,if Donovan doesnt spike a fever before friday we dont have to go friday just drop labs...YEAH YEAH...I am really crossing my fingers that he doesnt spike a fever...

WE are still worried about the bacterial infection he had and are hoping it doesnt come back...Because if it did more times in the day hospital more surgeries, and him being really uncomfortable for 14 days while he has a peripheral IV...yuck...

I AM REJOICING...Because Dr K couldnt be happier with him.. We didnt change any meds but she said we dont have to come in friday and I am just ecstatic...Literally I want to jump up and down and freak out...( I will jump with all fingers crossed of course lol)

PLease pray that donovan doesnt spike any fevers, that his 6 month studies go well and the results are positive and good and that he remains making developmental strides...

Please pray for the families here and far....Please say extra prayers for our friends, Josh, Zoe, Cooper, alexia, Ashley and all the kids struggling..Please pray extra extra hard for them...


Thank you to all the folks out there that made my mothers day so special with the wonderful messages, and surprising care packages...I am so humbled that you all have been following Donovans story for so long and for lending a helping hand...It means so much to us...

God Bless

Melissa ( so sad Darren left today... I hugged him so tight this time was harder than most to see him go)but I will see him again in a couple weeks thanks to a very special reader of Donovans story thank you for making it possible...

Monday, May 15, 2006 11:20 PM CDT

Geez

Quick update since its so late here...I just got finished watching the best Greys Anatomy ever Finale...Yeah...

Riveting as my friend Kabir would say...He is the one that got me started on all these series..

Caroline brought over Greys anatomy the entire season 1...Thats when I had my first crazy episode...I watched it over and over...i was so bored...I was by myself and with Donovan after he had just gone through major surgery...Alone in the hospital by myself and then discharged to go home alone with my baby...

ITs been three months since that sugery...And he is just now starting to feel really great...

Donovan still has his gagging and retching moments but its nothing like what it was...He is getting his feeds everyday ( almost ) for 20 hours like he should...

Donovan has had a great week and a half. He was battling a bacteria infection and as of sunday morning he is now not on any of the three antibiotics...Its cross your finger time for the next couple weeks or so...Pray that it doesnt come back...If it comes back, he will have to go into surgery again and his lines taken out, and then have a peripheral put in, fight the infection again, and then have new lines placed... Two more surgeries..Only these surgeries are outpatient...

Donovan is doing so well he just amazes.. THe little guy just jabbers all day long non stop...TOday during PT he did something that he has never done before ever...HE pulled up on to his elbow and then his hand while she was holding his hips down and pushed with all his might from a side position to a sitting position with his hand...

My little guy didnt cry, fuss, or complain during the first few times at all..But it was tiring on him and he had to rest...

Nonetheless, he is making strides and I am seeing them everyday...I get to watch him do it...

Dylan loves his bike...He hated to peddle, mostly because he couldnt reach the peddles but now watch out because he will come zooming down your street...

MOMS day yesterday, what a day...Not the day I expected but a day full of reflection, prayer, friends, family and hope.. ( oh and great TV)lol....

Dont take one single second for granted

Nobody knows where you might end up nobody knows ..We dont know what tomorrow will hold for us...We live day to day here and rejoice in the pleasure of having more...

One day, I hope soon, we will be back home as a family...But nobody knows when...and for now thats ok...My Teddy bear is having a great week and a half, dylan is enjoying his bike, walks, the pool and so much more...

By the way, Dylan is officially a big boy...We cold turkey potty trained him this weekend...WOW!!!Started friday and today even through a nap not one accident...CAN WE ALL SAY A BIG YIIPPPEEE!!!!!!!!HE did it!!What a boy...

Thanks Grammie...

Thank you to everyone for all the encouraging messages I really enjoyed reading them and am honored to be a mom...

Good Night and God bless our kids and families...

Melissa

Sunday, May 14, 2006 10:42 PM CDT

I hope every mom had a great day today...We all deserve a great mothers day...

Happy mothers day Again...

love

Melissa very proud mom to Dylan and Donovan

Friday, May 12, 2006 10:40 PM CDT

GOod evening

Donovan has had a great week...His counts today were excellent..The docs were worried about his liver functions but his labs look awesome..They are elevated but within good range ( whatever that means) We start our 6 month studies next..I hope that they all come back with good results... He has been in such great spirits this week..His therapies went well and was just happy go lucky...The glassy look for this week was lifted and I saw Donovan...Its been a long time since we have really seen the glow...Yesterday I was worried because he was flirting with a temp but I let it go because I so didnt want it to be true..Sure enough his temp came down and he felt better..YEAH!!! We are family this weekend...Three whole days...Yeah...

HAPPY MOTHERS DAY WEEKEND TO MY FELLOW MOTHERS OUT THERE..
MOTHERES THAT NEVER CEASE TO AMAZE ME WITH STRENGTH, HOPE, FAITH, LOVE, EMPATHY, AND GRACE...

I am honored to have met all the mothers out there and the moms that maybe I will meet or continue to virtually meet..I am humbled by our children who fight everyday for life, love, and hope of more life...

WE dont know Gods plan and Gods plan isnt on our time but his time...All I know is that our families somehow someway will be watched over and taken care of...

I dont know what will happen to Donovan nor how our family will continue on this path of exhuastion, struggle, hope, love, and the extreme faith that our plan is Good...

Its so hard to accept this role...I dont want it most days...I scream inside with anger and fear but then I pull myself together and look deep into myself and know that regardless of Gods plan our family will continue to be whole and full of life and love regardless of how much I just want to scream and be sad and angry..

I wish all mothers a VERY happy MOTHERS DAY WEEKEND with my utmost respect, love, admiration, and honor..

Please pray extra hard for the families and our family that continue to struggle everyday wondering what will happen next;in hopes we will feel safe, secure, and comforted...

Kids with life threatening illnesses and terminal illnesses are my heros..

WHo are your heros?

I love these kids and am honored to know them and will always remember them with delight, and passion for life...I pray for our friends near and far that are struggling, maintaining and living day in and day out with the knowledge that life might be cut short...But within my heart I know that life isnt cut short but continues to live on in the kids that are struggling...the laughs, and giggles I think are the little angels whispering to them that its ok...Dont be afraid...

With all my love and admiration to you MOMS

Good night and I hope you all have a good weekend

love you all so much

melissa ( glad that darren came back to NC unexpectedly and ready to snuggle and feel my security in the midst of all the chaos)

Thursday, May 11, 2006 8:51 PM CDT

Good evening,

WEll its the day after our 6 month mark...Yeah...I am so excited yet so cautious...Donovan has not had it easy these past 6 months BUT we are here and so proud of him that he has really made it this far...He has fought like crazy and he is still beating the ODDS..

He has had a good week..I am so glad...However, I am a crazy mess..How is that possible..He is great and I am a nervous wreck...I dont know...Maybe they should up my meds everytime they lower his...LOL...He is just doing so much. He can clap better, he can point, he laughs, he can reach better, and his face is brighter..He is our joy..His blue eyes burn right through you and make you want to reach out and just hug him and ask him what his secret is..How does he stay so strong..? I look deep into his eyes and sometimes teary eyes and I ask him how I can be more like him..He stares right back at me and I feel his little spirit touch mine..

WE have been here a long time and we will be here even longer..I havent been home once..I have no idea whats going on there.. That seems so strange to me...Everytime Dylan and I go for a ride he asks can we go home and I say yes and its the apartment...

He must think we are rich because we have lived in so many places...Poor kid..

I worry so much for him..This has really taken a toll on him just as much as us but its more sad because he just cant understand what is happening..It doesnt understand Donovan is sick..He just knows he doesnt want to go to the hospital...( donny's hospital)

Our family is tired, and I am very tired...DAy after day after day is a constant anxiety attack..Even if nothing happens..

I remain faithful that our family will be taken care of somehow and that Darren will come back to help me and that my mom will get better..She is in so much pain and it just breaks my heart...She can barely walk and get up and down..Her pain gets exacerbated by the stress of the situation too so this has not been easy on her..

Me, I am just taking the punches as they come and waking up day after day trying to enjoy the moment as much as a nervous wreck woman can..lol...

Donovan gets me through the day, dylan gets me through the day and knowing that there is a plan for our family is my main thought that I remind myself when I get down...

SOmehow someway...

Please pray that our family will remain strong and faithful...

Love
Melissa ( about to craft if I dont fall asleep first)

wednesday May 10th 2006

HAPPY SIX MONTHS BABY DONOVAN YOU ARE MY HERO!!!!!!!!!!

WE have made it to six months..Of course we have had our share of scares and bumps but we are still here and Donovan seems to be doing ALOT better everyday...

Thank you all for making these past six months possible, with all your encouragement, love, support, prayers, donations, messages, cards, hope, faith, and everything else that I cant think of...I LOVE YOU all Dearly...

I love these kids so very much...

I forgot to mention last night that a little new friend of ours that we met while donovan was inpatient for his pericardial effusion has earned his angel wings...He was a tough, playful, little boy...What a joy it was to see him and his mom on the unit...May prayers are with you Butler Family....

www.caringbridge.org/visit/bryanbutler





Donovan had a great check up today..Nothing much to report other than his labs looked good and he is ready for his 6 month studies...So more testing and lots of blood draws...I think we start that in the next couple of weeks...

TOMORROW IS OUR 6 MONTH ANNIVERSARY FOR DONOVANS TRANSPLANT!!!!!!!!

HIS ODDS CONTINUE TO GET BETTER BUT WITH HIS ISOLATED RELAPSE IT CONTINUES TO BE THE SAME IF NOT WORSE... ( VERY SAD)but we are so hopeful becuase he seems so great now. I have never seen him look so good in months and months...

WE did wait forever but thats OK...Its just very tiring and donovan gets really antsy...

Thank you all so much for all yoru support and fun care packages and just everything..I wish I could describe to you the emotional rollercoaster we go through day after day, but then you get something special in the mail or on your door step and for that moment nothing else is more uplifting and happy, even for the kids...They just get so excited...Dylan especially...Thank you for thinking of Dylan too...Poor kid..I feel like he gets neglected by me because donovan is very high maintenance with all his therapies and drugs and feeds and clinic all day long...He gets really upset with me and clings to grammie...I am so glad he has grammie for when he feels bad though...He has that rock that makes him feel safe and secure amongst all this madness...

I am so tired and have three more IV's to give yikes....

So I am hosting a party for me and a few of the moms here...Its a nice way for us to get together and also do something nice.. With the purchase made by others the hostess gets free merchandise...


so, If anyone out there loves stampin up or would like to order anything my party is this saturday May 13th...I can order the merchandise then and have it shipped to you...Just email me your order and info and I will get all that stuff together for you...

If you would like to know more about stampin up and what they have you can go to their online website at www.stampinup.com and view their catalog and their mini catalog...Their stuff is so cute and everything matches...

I am writing this again in case their are stampin lovers out there that might want to buy some stuff for my party I am having on saturday the 13th... no pressure just thought i would throw it out there...

love
melissa

Monday, May 8, 2006 9:29 AM CDT

MOre updates: I am getting ready to take Darren to the airport and am sad...I wont see him for another month...Yikes...(insert tears) I cant wait for the day that we can be together...I wonder if Donovan will notice...He sure notices when Darren gets back...he clings to him like crazy...( ahhh) Anyways, today has been full of ups and downs

I have been stressed beyond my ability to cope today ( maybe because I know darren is leaving and I wont have help with Donny) and am really starting to jsut get plain mad...I cant please anybody it seems and I am trying so hard just to do my best...Sometimes I just want to be left alone...

My mom is having more and more pain is less able to really do alot...She hurts all day long and it just wont stop...So its harder for her to be with dylan and even harder to help me with donovan.PLease pray that she feels better..Its seems like she is getting worse and worse...Doctors dont even seem to know whats wrong...I am very sad for her...

On the bright side of the day, We have had some very very kind people help us this weekend with clothes for donovan and other really cool plates for the kids, and I got great crafting stuff that I dont have and really wanted but never bought it...

I have reached my limit this month for crafting supplies...(bummer)I have my own mini budget for little things to lift me up through out the month and I have given all them up so that I can craft...I love crafting..Its so cathartic and I will have these memories that I have made beautiful forever...But everybody around me seems to not appreciate how much it really helps me...( I am sad )

So in light of crafting, to all you crafters out there I am having a stampin up party...No offense to my favorite scrapbook store...because I love you all so much.. But I also like stampin up too.

So I am hosting a party for me and a few of the moms here...Its a nice way for us to get together and also do something nice.. With the purchase made by others the hostess gets free merchandise...


so, If anyone out there loves stampin up or would like to order anything my party is this saturday May 13th...I can order the merchandise then and have it shipped to you...Just email me your order and info and I will get all that stuff together for you...

If you would like to know more about stampin up and what they have you can go to their online website at www.stampinup.com and view their catalog and their mini catalog...Their stuff is so cute and everything matches...

DONOVAN did AWESOME TODAY IN OCCUPATIONAL THERAPY AND PHYSICAL THERAPY EVEN THOUGH THEY WERE BACK TO BACK...HE CANT DO A WHOLE LOT YET BUT I SEE IT COMING....(YEAH INSERT TEARS OF JOY I AM SO EXCITED FOR MY BABY TO BE ABLE TO MOVE!!!)

5-6-06

Donovan had a good day yesterday..He hung out in doors and just enjoyed being with the family and grammie...

Darren, dylan and I spent lunch and a little of the afternoon together...Darren leaves back to Indy tonight so we wanted to spend as much time together as possible...

WE had a great lunch, played around and tried to be "normal" like all the other families...

WE got home and just hung out watching movies...LEts see we are serious movie fanatics because thats really all we do all day...I craft and watch movies and the kids and grammie hang out on the computer and watch movies...Dylan loves this new computer thing he got as a gift it has all sorts of his favorite characters on it...He feels really grown up...

Donovan had a good day yesterday... He was so playful and happy... He is starting to learn more things...It is really cool..He still can only sit up but I think in the next couple of months he may start to roll and even CRAWL!!!He is getting much stronger...WE put him in his stander twice a day for an hour...I think its really helpin him...

Hes getting really cranky now we ran out of his methadone and for some reason we lost the new one.. I have no idea how that happened..Probably because we are all suffering from SEver Stress dementia if there is such a thing...

Darren just left to go get another Rx...I hear him crying...Poor baby still hurts...I hate that the most about all of this...You can tell when he is not feeling good and you can tell if he is in pain..

I havent heard from the docs about his cultures so all the antibiotics he is on for his gram positive bac infection must be coming back negative...(YEAH) so now after the antibiotics have run their course we wait to make sure it doesnt come back..If it does more surgeries for my sweet baby...He will have so many stories to tell about all his scars..

I must go for now...TOmorrow is the big clinic day...I get to hang alone for 8 hours...EVeryone will be gone except for my mom and dylan... (sad)

GOd bless our children...

Please say extra prayers for my friends, ashly, zoe, josh, and for my dear friends in Indpls that are having tough times right now too...

love
Melissa

Saturday, May 6, 2006 5:37 PM CDT

Hello

What a day...Today was so beautiful outside and perfect weather for the rainbow walk of heroes...The whole family made it along with a friend that we have met through this caringbridge site...

The walk was so nice and it was great to see so many happy kids having fun...I was so glad to see faces I havent seen in a while...It was great seeing Nina, Christine, Jo, and of course others that I have known through out Donovans journey through treatment...

I cried, laughed, and had a great time...It was the biggest turn out ever and also raised the most money this year for the Transplant unit...WIth out this walk the support that many of us have been honored to have is because of this walk...

This year we didnt form a team to help raise money...Right now we are just trying to make it day by day...But I made them a gift that I hope they will enjoy...

I painted a canvas with a large beaded flower and written around it was the mantra of the unit : GROW CELLS GROW...

I left a little mark I hope and maybe nexy year we will be in a different position...

I wanted to say thank you to all of you for your support to me especially after that awful email which after I emailed her back I quickly deleated... I was so hurt.. I didnt sleep well and woke up this morning with my feelings hurt that someone would say such horrible things to me...But I know that it must be really sad to be in a place to have to lash out at a stranger and I then stopped and said a special prayer for her..I hope to never have to endure the pain of losing a child..Because I know what its like to get close many times...

Thank you thank you all for your support for our family and for your help...The struggles are unimaginable and with the positive messages, emails, cards, donation, and just everything our days are brighter....

Thank you from the bottom of my heart

love
Melissa mom to the crew

Friday, May 5, 2006 10:08 PM CDT

MOre updates about my favorite boys.

Donovan first he is the youngest...I think I forgot to mention what my little teddy bear is able to do now so I will list it..

1. He points at stuff
2. He is signing a little bit ( more and all done are his favorites)
3. He can say babababa
4. He can hold more weight on his arms and through his legs...
5. He babbles non stop now...
6. He loves to tease Dylan by taking his choo choos..lol
7 He loves nap time, you lay him down he falls right to sleep at anytime during the day
8. He is now learning cause and effect
9. He loves his nurses ( at riley and Duke)
10. His spirit is stronger than anything that ails him...

Donovan had a great day at clinic...His labs are awesome and so far the cultures are negative...YEAH

I just took some really cute pics of him which is now the main page pic..He is smiling and going crazy and he is in his stander. That crazy blue contraption...

Donovan is my hero and I hope that I will be able to live one day to the fullest as he does everyday...

DYlan, darren and I just have been hanging together riding bikes, we went to a barb que that was fun...Dylan is getting so big and just loves to hang with our fellow transplant neighbors...Our street consists of transplant folks and their kids and all boys. ITs just great...Dylan just loves it so much.

For the first TIME EVER, a little boy named Kayden came to the door to see if Dylan wanted to come out and play..He was so excited...He now has friends that come to get him rather than vice versa...I am so excited for him...I think he is handling everything a little better now...yeah yeah yeah..

PLease consider donating what you can to our precious DOnovan His fight is so far from being over...Donate because he and others just like him can teach us that life is painful but truly blessed...I am blessed each and everyday that I wake up and can see his precious face smiling away and saying mamamamamama...Its amazying.

I received a very disturbing email tonight from a single mother of a daughter that has passed from brain cancer... How sad reality really is...I know each and everyday that our realities are one and the same...

She is disgusted that I have asked for help...I must say that it is so hard to ask for help and I dont know what else to do...Please please dont take our asking for help for anything but what it is....We are doing our best to take care of our son...WE are 700 miles a way from home, and selling everything we own to be here without knowing what our fate will ever be...

God Bless our children tonight that continue to fight, maintain, and keep their spirits high no matter what...

love
Melissa

Thursday, May 4, 2006 8:22 AM CDT

Good Morning

I hit the snooze three times today.. MY snooze is Donovan...He kept wanting to get up...So I went gave him s some water, changed his diaper, rubbed his head and he went right back to sleep, yeah...I did that three times until I realized we NEEDed to get up. What a teddy Bear..

Today is another clinic day as is tomorrow...Yippee.. HOpefully today will go really fast though.. WE arent sceduled to do anything that will take a lot of time...Donny is doing great.. He gets his uncomfortable moments when he gets vancomiacin but I give him beandryl to take the edge off.. Other than that he seems to be doing well..

I had a friend from Clinic over yesterday with her baby that is alot further out than we are... WE had a lot of fun watching movies and as she would say I was doing my craft crap...lol.. She is so funny...She organizes me and I craft...

DOnovan had a pretty good day..He went for walks, played with Dylan, played with his speech therapist, and his occupational therapist, and then of course cuddled with his mommy, grammie, and grampapa.. He is so sweet and such a snuggle bug...Only the kiddo is getting really heavy....Break your back heavy...I think his weight was up again on tuesday...He is almost 25 pounds...What a sweetie...

This weekend is the Rainbow Walk of Heroes...WE are excited to meet all the other families just like us..It will be probably really emtotional and since I am VERY EMOTIONAL I will ball the whole time...

Write more later with more news about the teddy bear and family..

THANK YOU ALL SO MUCH FOR ALL YOUR KINDNESS, GENEROSITY,LOVE, PRAYERS, MESSAGES, AND CARDS..IT MEANS THE WORLD TO US...

LOVE
MELISSA

Tuesday, May 2, 2006 10:45 PM CDT

Hello

Yes Today WAS VERY LONG and I am very exhausted..Not Tired exhausted just physically exhausted...

DOnovans labs were great except for his Vancomiacin level its supposed to be around 5-10 and his was 3.5...And this was after they upped the dose by 50mg already..SO now we are going to the three times a day IV Vanc...Yuck...Three times...Dr K also put him back on Methadone because he has just been very aggitated during the day and its always around the same time...SO she thinks it could be withdrawal..She said its not going to hurt him so we are going to put him back on that...Overall Donovan was playful today...He got IVIG and IV Pentamadine and started retching. The IV Pentamadine can cause nausea and since he has a Nissen he cant throw anything up so he just gags and retches..(thats awful..)

On the BActerial infection front, we are hoping that this round of antibiotics gets it really good... Because if it comes back then he will have to have his lines taken out...More surgeries...He will have to have a temporary peripheral line put in (ouch) and then new lines put in...After of course the infection is gone... WE go back to clinic on thursday ( no two days for us this week) to redraw cultures to make sure that the antibiotics are working and to just get a quick check up..Then we go on our regular scheduled day friday...I sure hope thats it for the week...Almost forgot to mention...It is almost 10:30PM and Duke home health hasnt delivered donovans vancomiacin for today or tomorrow...I AM FREAKING OUT...I email Dr K...Talked with the pharmacist on call and they cant get the vanc out to me until midnight tonight...WHich means I have to give it tonight at midnight and then wait until its done at 1AM...I am so tired I hope I dont sleep through it all...oh my....

AS I have always said Donovan loves to keep us on our toes...Little teddy bear...He is just the cutest thing ever...He loves to flirt like its nobodys business. HE has the tilt of the head and the batting of the eyes down pat...What a cutie...

PLease pray that donovan will not have to have his lines removed and that he will get through this obstacle as he has many others...



Thank you allso much for donating to our family...IT means so much to us...I wish I could describe in words the anguish, fear, anticipation, and anxiety that we go through everyday not knowing what will happen next...And that going home is not in our near future...Thank you all so much for continually checking in on us and praying for Donovan...I wish that you could all meet him in person...Your hearts would melt...If they are already melting if you were to see him in person he would really show you what a true gift he is...What a sweetie


I know everything will work out...I know GOd is watching over our family..I know there are so many prayers for us..But somedays seem so long and so hard I pray that its easier for me to feel the comfort of those prayers...SOme days I am numb knowing that I just need to get through this one day...But when your days become longer and harder the numbness gets worse...

God Bless our children and their families that endure the greatest blessings their children but also have enormous amounts of responsibilty, struggles, fear, anguish, heartache, and uncertainty...

Love
Melissa

Sunday, April 30, 2006 11:02 PM CDT

Friends and family

Donovans picture is a quarter of the way finished. Which means that there have been alot of people donating to help our family and especially Donovan...For some reason Donovan loves to keep us and the doctors on our toes...

But we are only a quarter of the way...For those of you who have contributed thank you so much...It means so much to how we are able to cope here in north carolina while still maintaining a residence in Indiana...( hopefully we will get back before fall, keeping my fingers crossed)

PLease COntinue to send Donovans story to those you know so that they will see what a true warrior he is so they too can help our family...I know many of you have and we thank you so much...IT IS VERY HARD TO BE IN a situation that calls you to have to ASK FOR HELP...It is hard to be on the receiving end... I know I have to do what is right for Donovan but please know that one day The DOnovan FOundation will be around and able to help families just like us. So if you have anyone interested in hearing about a hero's soon triumph please send them his story...


Hello

Gosh we are day 170 and some change...Holy cow...I can hardly believe that we have come so far...

WE have also come so far with what I would call alot of stress...But that comes with the territory and I try not to dwel too much on it because honestly who the heck knows what will happen next....( crossing everything that its nothing much)

Donovans cultures came back gram positive for Enteroccocus...I have no clue what that is or where it resides...All I know is that any bacterial infection is not GOOD at all...In fact its very bad for any child let alone a child that has an immunodeficiency...

Donovan however, is in good spirits and is doing better today...He was a little more playful but not much...But he still was smiling..

This weekend was so great. I got to spend it with my brother his wife and his absolutely precious new baby Layla...She is just such a sweetie pie...I miss them already...My sis inlaw and I crafted forever it was great fun..I think she is going to have a new passion...

All of us got to eat out together and really get to spend time together and that was just great...Especially since I have no idea when I will be able to see them again...Its been a year since I saw my brother...So who knows..


Donovan had to go into clinic tonight.. His Vanc blood levels came back extremely Low and they had to give a boost IV to get his levels back up to a therapeutic level...So Once again more days at clinic..I sure hope that we dont have to go in tomorrow because tuesday is our super long day and now that the Rainbow walk is this weekend most transplant kids schedule all of their yearly visits around that time so they can be there...Yikes its going to be so hectic...

Donovan is now resting peacefully and I am about to go give him his 3 IV he is now on every morning and night...

I really thought we were making progress by only being on one twice a day but that didnt last too long...

God Bless our special children that FIght like crazy to beat these horrible diseases its just not fair they have to go through this so young...they are truly robbed of so much even if us grown ups learn incredible lessens from them...

Love

Melissa ( missing darren he left this morning to find more work, silver lining is that with the help of donations he gets to come back and walk in the Rainbow of heroes Walk and we all will be together as a family...) Thank you thank you thank you...TO all who have helped our family....

Saturday, April 29, 2006 8:24 AM CDT

Quick update 8:00PM

DOnovan is feeling better after his doses of Vancomiacin and I am so glad he is more comfortable...

PLease try and Stop by a good friend of ours Ray that earned his angel wings this morning...This is very difficult for their family and they could use the extra prayers and comfort..These are our friends from Indianapolis..

www.caringbridge.org/in/rayspage


Good Saturday morning

I woke up early because I had so much to do and thank goodness because Dr MArtin called to tell us to come to clinic early because one of Donovans cultures already came back Gram positive Rods but they dont know the exact bacteria yet...I think that is what he said it was kind of a whirlwind of a conversation...

THis is all such a bummer I really thought this was the week we would only end up in clinic twice.,..WEll how about 5 days a week for the past few weeks...Its so exhausting... I also dont get to spend time with Dylan and he gets mad at me...ITs all just so sad..

Poor DOnovan no wonder he is just not feeling well.. The poor baby cries and whines or sleeps all day long...He just feels crummy...

I knwo I dont have mommy voodoo but I swear I told Dr K something wasnt right and that I wanted Donovan to stay on antibiotics and she obliged thinking it couldnt hurt anything...Turns out even the antibiotic he was on couldnt touch the bacterial infection he has...What a bummer..

I swear I am so intuned with Donovan that I just know it when hes not right...I have noticed so much and how weird is it that its all turned out to be something serious...

ANyways Darren is off to clinic...


Oh I forgot to tell you all that we now have to go to clinic twice a day once in the morning for vancomiacin and at night...YEAH!!!! I am so excited about that...The weekend my brother visits...His once a year visit and everytime we end up either in the hospital or in this case the day hospital... What a bummer...Thankgoodness Darren said he would go so that I could spend time with my brother, his wife and their new baby that I have never seen..Their baby is now 4 months and who knows when I will see them again...

SOrry I have to cut this off short...I will update later with more news after darren gets back from the day hospital..

love
melissa

Friday, April 28, 2006 8:29 AM CDT

More updates: Donovan hasnt been feeling well at all tonight so he has been asleep from about 7pm until I hope the morning..He is just him self..And Last night we were so scared to see him so fibrile and uncomfortable its absolutely unnerving...Sometimes I just wonder how much more can you take..Heck, How much more can DOnovan take...We thought this would be the first week we were in clinic the obligatory two times...Once again we arent..In fact we go again tomorrow...

Donovan is now on a stronger antibiotic and hopefully whatever is trying to ail him will stay the HECK away...

IT almost midnight and I of course the chronic insomniac that I am am going to toss and turn while I am up hour after hour making sure the little guy is ok... Goodnight
DOnovan is still in clinic 5:00PM
He is finally finished...They were keeping us captive til they could figure out what was wrong with him...He doesnt have CMV or EBV...They arent actually sure what is happening why his fever got completely out of control...But his labs look so much better after only one dose of vancomiacin...His WBC went from 15 something back down to 8.. So that is a good sign...They also did a CBC(blood test with differential) to see if there were any suspisious cells floating around... But there werent./.YEAH... So now I am awaiting the arrival of Darren and Donovan while I hand out with my brother and his wife they came in today to get all the results...


Good morning

quick update...We are running out the door once again to clinic...HOwever, this time we are running out the door a little earlier than normal..

Last night Donovan had spiked a serious fever 104.5 (39.7)...It was really scary..We had to take him to the Bop room on the 5200 unit floor... They ran cultures once again, and labs...

His WBC went up from tuesday...Actually it doubled... It is now at over 15.2...( I cant remember the exact #) His liver function labs also came back really elevated and the Fellow on call said it can only be from an infection like CMV... So we are Off to CLinic to find out why donovan is not feeling well...He is still very hot and we are unable to give him any tylenol...WE gave him all his morning meds but he is extremely uncomfortable and has been whinign and crying since he got home at 4am from the Bop room...

WE got a few hours of sleep thank goodness...

More to come...

love
melissa

Wednesday, April 26, 2006 9:34 PM CDT

Hello From the Old apartment!!!.. We have it until tomorrow at 12PM ....I cant live without checking on my CB kids...I just love them...What strength....Its truly inspirational...

Donovan had a good day..He just kind of watched as well all came and went all day long with lots of stuff. He loves this new toy and literally played with it all day today..He especially loves the sunshine magnet...Its amazing what he is drawn to...I think it is so representative of his strength and fight to kick cancers butt in a BIG way...

When he saw Daddy this morning he was so happy...I took so many pics...I couldnt believe how both of them looked as if they had been on vacation.. They both have such gorgeous olive skin...I wish.. I of course have the irish skin pale and red..

Darren tried to get up after being with DOnny to take a shower and Donovan went bollistic..So Darren sat back down and Donovan put his hand on Darrens leg to make sure he wasnt going anywhere...It was so sweet...It made me so sad that Darren wont be able to be here everyday with us...I was internally crying because there were so many people around..I prefer to freak out when no one is around...Nonetheless, Donovan managed with a few bits of daddy all day long and for the next few days...Yeah!!! We are all so glad he is here...

WE saw one of our primary nurses at Sams Club today, Bobby...WE miss our primary nurses so much...They were so Good to us...Our other primary nurse is coming back to Durham, Cheryl...I hope she gets to see Donovan...They have such a connection...He just melts in her arms...

There are so many kiddos out there struggling so hard, with all of their might, and it breaks my heart that kids and babies have to struggle so hard so young...Tehy teach us older folks so much and I just know that God is watching us and Donovan and all the kids...Our experiences are all intertwined with God at the very core...I just know things happen for reasons, and I am desperately trying to live one day at a time..Its been a struggle but I am trying so hard and the kids you and I follow sure teach us that each day is filled with so many blessings...

God Bless tonight

Melissa ( thank you all so much for helping our family, we are so thankful I am in tears that I cant stop because I know that it will help our struggles seem less and help us fully concentrate on being with Donovan and Dylan and as a family not torn apart by this NASTY DISEASe CANCER!!!)

Tuesday, April 25, 2006 8:09 PM CDT

Good Evening family and friends

We have an urgent prayer request for a very special boy at Home in Indianapolis... Ray is our young friend that was transplanted last year and relasped after 140 days...He has since been on different chemos after deciding himself he didnt want to go through another transplant...

He is now in the hospital facing some really tough days...He has CMV in his lungs and his parents have made some really hard decisions as to how they will proceed...

Please pray for Ray and his family for strength, love, faith, and that God is with them every step of the way...

www.caringbridge.org/in/rayspage


On a lighter note, Donovan is doing well...He is still fussing and having a weird cough and ear thing ( not sure exactly what ) so Dr K decided that it wouldnt hurt to keep him on Rocephin for the next few days... She also reduced his methadone ( first time in 4 months to twice a day instead of 3) Yeah...

I hope that this will be the first of many weeks we are not at clinic more than 2 times a week...We have only been to clinic since we have been out 2 a week maybe twice... So this will be a nice treat...Especially since we have to move to save money and my brother and his family are coming to visit...

God Bless our Children

I have felt so sad lately for the kids here and at home and know the hurt, pain, struggles, and fight that it takes to have to live with a child with a life threatening disease that can take over at anytime...PLease pray for our families...


I would like to say a special thanks to the many folks that have donated to our family...Gosh I am at a loss for words which is not often lol... and am overwhelmed that so many folks out there are hearing Donovans extroadinary journey... Thanks to Grace tonight for the VERY special Gifts to Donovan and DYlan...Oh my gosh they went crazy... What a great time...In fact it was so cute I am putting the pics up...

Love

Melissa ( excited Darren is coming to NC tonight to bring our furniture ugh moving tomorrow and thursday no FUN!!!)

Tuesday, April 25, 2006 7:57 AM CDT

Good Morning

I just wanted to give you all a quick update again before we go to clinic for our very long day....UGH!!!

Donovans cultures have come back negative thus far as well as negative for the rotovirus...YEAH....I am so glad...

He is doing pretty well but still a little uncomfortable from his testicular surgery so the docs said that we could give him some pain meds for that again...

Otherwise our little warrior is doing well and so so cute and playful...If you all could just see him play peek a boo you all would just be so tickled...He truly is the cutest teddy bear ever...( I am biased of course )

The rainbow walk is in a couple of weeks and I completely forgot that kids from around the country and world make their annual visits so that it corresponds with the walk so I just realized that our clinic days may get REALLY REALLY LONG!!!

My mom and I met a family last night that moved across from us for two weeks.. They have a daughter named Haley.. SHe is three years post transplant...She has Hurlers a metabolic disorder. She is just precious..And their family is so so nice...Of course, the talker that I am talked so long that poor Donovan was screaming for me to start his feeds and my mom had to come and get me..Ooops LOL...

I know I sound like a broken Record and pitiful but Our Picture of Donovan is only a quarter of the way uncovered... I am leaving it up until it is finished.. If you havent already checked out his picture please do and know that every DOLLAR counts... Our family is depending on the help from our friends out there in cyber space...Darren and I are really uncertain of our futures and I am really starting to worry that we wont make it..I know we are being watched over and we will some how get through all of this...But The worry about the future and the unknown is very SCARY....So please spread the word if you already havent about our Warrior BABY DONOVAN...

THANK YOU THANK YOU THANK YOU

Love

Melissa and the Gang

Monday, April 24, 2006 9:37 AM CDT

Friends and Family

I am writing this quick message before we go off to clinic again with Donovan...That our Dear little warrior friend Micah has earned his angel wings... He earned them yesterday.... WE are so saddened to hear about Micah but know he is now healed in Heaven...

If you get an opportunity please stop by their site...

Our kids lives are so precious.. These diseases are so without question unfair for little ones to have to endure and know no other life...

I am so glad that with the help of friends and family that Donovans picture will be revealed and we will have the means to stay with him through all his trials and bumpy and smooth roads...

WE will be leaving the picture up until it is full...So please know if you cant donate now it will be up for awhile...


Micah's webpage is www.caringbridge.org/al/micah

Love

Melissa ( very sad for susan and her family and for all of our kids that have to suffer so much but in the end these kids give us the perspective and love that no one can ever take away)

Sunday, April 23, 2006 8:33 PM CDT

Hello Family and friends


Geez how the day just flies on by when you have so much to do...ANd I am not being facetious...I hope I spelled that right????

I thought today would be a great workout day. I would have a great run and the stress of a new day would just sweat away...

Well I guess somedays get the best of me..

Today I could hardly get out of bed...I wanted to run but for some reason just couldnt.. So I called friend after friend after friend just to talk and vent..I am not sure what about but I just wanted to talk...So I went to visit my crafty friends mom Cathy...Cathy is very crafty too..

Well I got a friend on the phone and she too was at clinic...I was so dreading having to go to clinic again..I just didnt want to go...But I had a friend there so I got my stuff together and my dad and I went...

Having a friend at clinic the same day is nice...It sure makes going to clinic everyday a little more bearable...

DOnovan is doing well...He still pulls at his ears as if they itch or hurt or something but so far so good...The cultures are negative for now yeah...I also didnt hear back from clinic about DOnovan having the rotovirus so I hope that is good news...That is a nasty virus that spreads like crazy....And you get to be on isolation forever.. Sometimes I think Isolation is probably a good thing...no Germs...

Duke is having their annual Rainbow Walk...Its is to raise money for the Pediatric Bone Marrow Unit at Duke...The money goes to all sorts of thing: help families with finances, crafts, food, all sorts of stuff...ITs really neat and there will be folks at the walk that were transplanted 5 or more years ago and of course newer families like us too...I am excited to meet my friends from ALL-Kids...I have met a few at their yearly check ups coincidentally but this walk will be really special..They honor all the kids...Donovan will be on the T-shirt this year since he was transplanted in November of last year...Its like taxes they go back a year..I am excited but sad that I wont be able to really raise any money for them...I also dont have a team for DOnovan which also made me feel sad but we have so much going on and our finances are so bad right now we just cant...

BUt I am making something special for the unit...(something pretty and crafty) and A big Collage of Donovan since we have been here at Duke...So I feel Like I am doing something..

I hope you all have had a good weekend...A blessed weekend...And that the start of the New week will bring good news, and blessings...

Please continue to pray for our friends that continue to struggle and comtinue to fight for their lives...These little kids are stronger than any one I have ever seen and they truly are amazying...The fight, spirit, and sheer ability to be a kid regardless of how awful they feel is inspiring...I love these kids so much...

Please continue to pray for Donovan that he will get better day after day, and that his leukemia does not pop up again, his tummy troubles will cease, he will be able to participate in his therapies, and continue to have an incredible zest for life...

Love

Melissa ( getting excited that Greys anatomy is on tonight!!! and working on my project for the 5200 Unit)

Saturday, April 22, 2006 7:45 PM CDT

Hello Family and friends

BEfore I get into even more drama for the day.. I thought I would talk about Donovan and how sweet he is...

He loves to play peeka boo but he plays with only one hand and one eye...Its really cute...EVery once in a while he uses both hands but he prefers his left over his right which is fine by me since I am a lefty and so is my husband...So go LEFTIES....

He always says mamamamamama its so sweet...He can sort of do two words in sign language: more and all done...

He is very inquisitive and loves to watch things fall of the edge as he slowly pushes the item over...Its funny but tiresome since i have to constantly clean everything that goes overboard...He loves to flirt with any girl that comes in sight especially his nurses and everyone that takes care of him...He smiles with his head slanted and bats his eyes...Its hysterical...HE loves an audience...

He loves to tease his big brother by pulling his hair, his ears and taking his toys...And of course he loves his mommy...I think he gets his great tan from his daddy because he looks like he just got back from a jamaican vacation...(thats what we are going to tell the neighbors)lol

Theres so much more but I know this is already long..

So back to the drama.

RAIN RAIN AND MORE RAIN today... YUCK...I was doing errands all day with shannon my fellow mom of 5200.. WE ran out of papertowels...Imagine going through 20 rolls of paper towels every couple of weeks..Yep thats us...

Donovan decided to try chocolate milk today so I thought cool lets give him some..Well that was a very bad idea...he retched and gagged for a half an hour...Ooops..

Then I went out some more to do more errands..Got home DOnovan still sleeping..Been alseep practically all day (odd)... I finally got home from all the errands and Donovan has a temp of 101.5...Well thats not good..So I check again...Still very high.. I check and recheck and it didnt go down...So I made the dreadful call to clinic and we have to go in...Donovan might have rotovirus which is going around like a wild fire here...So the treatment for that is a 6 week treatment of IVIG 3-4 times a day...One more thing to remember... PLus Donovan is going to be seeing a GI doc about his lack of mobility in his bowels...We hope they can figure out why he cant poop...He can only poop if he is givin the big guns of laxatives...almost an ounce a day of laculose..Its straight oil of some kind.. Very gross...And of course he poops on everything...Really fun more diapers more trips to sams...

2 and half hours at clinic...and Another trip tomorrow...(I am really trying to pysch my self up for another trip to clinic our favorite place)...

Geez I am exhausted just thinking about it..ugh


love

Melissa ( picked up my dad from the airport we are all so glad he is here especially dylan his toy is back)

Friday, April 21, 2006 6:08 PM CDT

Hello Friends

Just getting back from clinic...What a long day.. We were there for over 6 hours..I will tell ya it sure takes alot out of you being there so long...Donovan had to get a blood transfusion which takes over 3 hours....!!!!

(DONATE DONATE DONATE BLOOD AND PLATELETS)

He has been in a good mood since he got blood and is more upbeat so I am glad...I dont like seeing him down in the dumps...Its just too sad...

Other than getting blood he is doing really well...

I am feeling pretty numb today about the news from yesterday...Cancer again...Gosh just hearing and saying it and writing it makes me feel so weird....His risks are so much greater now for the leukemia to come back.. NOt because of it being in the testical but because there is a very high liklihood of their still being dormant cells in his body somewhere...That is why Dr K stopped alot of his meds. So that the New Donor cells can really start attacking any leukemia cells...

That has its own set of problems and of course he has to be watched very carefully for graft vs host disease...It can easily come and take over an organ or just make him feel really bad ( stomach problems, rash problems, all sorts of things)...So life will be very interesting the next few weeks...He still has a therapuetic level of cyclosporine in his body so its not gone yet. It can take a while for it to be completely get out of his system, apparently it must have a really long half life.....

Anyways, My dad arrives tomorrow and my mom is so excited as we all are..Dylan is just going to freak out when he sees papa...

dylan is so cute by the way...SOmetimes when he doesnt want to take a nap he comes up with reasons why...ANd the other day he told me he couldnt take a nap because his Eyes were broken... I thought that was so funny... TOday I called him kiddo and he said he knows what kiddo means so I said what does it mean and he said it means sweatheart...So then I said well what does sweatheart mean and he said pumpkin...He is so cute and just so inventive...what a trooper to also have to go through all of this..Being so isolated from the world...

Big thanks to everyone checking on us, leaving messages, praying for us, donating to our family, and supporting us through this very trying, faith questioning time...


with love and gratitude

Melissa

Thursday, April 20, 2006 3:16 PM CDT

Hello Friends and family


Its 8:19PM and I just got the call from Dr K. the pathologists ran test after test after test and they all came to the same conclusionl...donovans testical was cancerous. It had leukemia in it...we did all the right things..The only other thing Dr K said that we could do is radiation but she said there is a really good chance that we dont need to do that since the other testical wasnt effected...

I have no idea what the heck i really feel about this...I knew deep down that it probably was leukemia but was hopign it wasnt...

Now that we found out that the leukemia was found in his testical our stay here is now indefinate.. dr K is going to be doing weekly checks on him and just other routine ultra sounds on his other testical.. his chance of making this far wasnt great but we hope that because the leukemia was localized it wont raise its ugly head anywhere else...

Thanks to Ursula for having lunch with me and a quick shopping trip which we didnt find anything...Oh well...But it was nice just to get out and be away from things...Even if that is all we were probably thinking about...

TOmorrow is clinic...Donovans Hemoglobin is borderline low at 8.3 but he goes up and down so hopefully they wont give him any blood becuase it takes forever to give 3 extra hours at clinic..


Like I said before another rare case probably.. We just keep getting luckier and luckier...One day I should just play the lotto...


Donovans Picture fundraiser is still not completely revealed which means we have lots more fundraising to do... Please help donovan and our family...WE have lots of worries around here and I just so want to be here with him and not have to worry about having to get a job or darren not being around for months at a time...It so hard as it is....I know I have said this many times but even the smallest amount is helpful...This is very hard for me to ask for help and I hope you all know who have already donated to help us that it truly means so much to us...There is so much sacrifice and we feel so broken already and just want to be together.


I will update once I know anything again and after Clinic tomorrow...

Love

Melissa

Wednesday, April 19, 2006 4:35 PM CDT

Hello everyone

No News yet...I am just waiting and waiting and waiting...IN the meantime I am eating these little tiny chocolate chip cookies...I think I have had like 5...The box will be gone soon if I dont get any info today...lol

I walked to the club house and as I was walking I was just thinking and thinking..TOday has been a pretty quiet day so your mind starts to wander...I kept thinking about our families future...What is going to happen...What will happen to our jobs, when will we ever get home, when we get home what will happen, and now I am writing about it because I just want to get it off my chest and feel better about our day to day events...

Donovan is feeling better and is smiling more and that is just such a delight..He had OT today but half way through I got up to do something and he freaked out that I left and he never recovered..He screamed himself to sleep...

In the meantime we are just hanging out...BAsically doing nothing..


Thank you all so MUCH. YOU HAVE NO IDEA, I REPEAT NO IDEA how helpful and just thankful our family is to know that there are people that really care about donovan and our family...We dont know what our path will be like here but we are truly grateful that we are getting closer and closer everyday to not have to stress about staying or going with all of your help...THank you thank you thank you

I cant wait to see my warriors face uncovered so that all can see what beating the odds again and again and again really looks like...The picture shows a smile. A smile that says, "I can take anything on", a smile that says, "I love you even though I cant speak", a smile that says, "I will never give up", and a smile that says, "mommy I will be ok please dont cry"....Please Help us reveal him to show everyone what that entire smile is and means to all Cancer patients and families dealing with the sadness, pain, problems, and everything that comes with having a child with a life threatening disease.....

God Bless our Children They fight so hard everyday....Please especially pray for josh, Ray, Zoe, and Micah, that they will win their fight...

love
Melissa

Tuesday, April 18, 2006 9:47 PM CDT

Another Update its now 9:15PM no news from Dr K. That means that she hasnt heard...oh dear...DOnovan the lucky one to always stump the docs...Geez...

BACK FROM CLINIC

Donovan is looking good...His lab looks good his echo came back great. his bms and LP from last week look great, and he is happier...

HOWEVER, and that is a BIG HOWEVER, ON saturday Dr K called me to give me the results of donovans biopsy from his testical...Apparently those results were not conclusive...

She told me today they are still not sure if Donovans testical was infected by the mono virus or if it was Leukemia...

I am freaking but trying not to because we did the right thing and removed the testical but Now I wonder if it could spread...I guess Dr K has had a case where that has happened..One case. Well Donovan seems to always be that one case these days and ever since he was diagnosed...I am worried about stopping all of his meds that help with his new donor cells take, I am just worried...But I am trying to remain as calm as I can be...Becuase at this point there isnt any thing else we could do besides what we have already done... But it still makes me sad and Hate Cancer but then I think IS IT REALLY CANCER OR ISNT IT?????

I am not sure if any answer would make me feel better but atleast I would know for sure...

I Will update when Dr K calls me with the OFFICIAL REPORT...

by the way we are moving to another place here at the same complex so we will get mail even if it was addressed to our old address. We are moving next thursday and I will post both addresses..

Thank you all so MUCH. YOU HAVE NO IDEA, I REPEAT NO IDEA how helpful and just thankful our family is to know that there are people that really care about donovan and our family...We dont know what our path will be like here but we are truly grateful that we are getting closer and closer everyday to not have to stress about staying or going with all of your help...THank you thank you thank you

I cant wait to see my warriors face uncovered so that all can see what beating the odds again and again and again really looks like...The picture shows a smile. A smile that says, "I can take anything on", a smile that says, "I love you even though I cant speak", a smile that says, "I will never give up", and a smile that says, "mommy I will be ok please dont cry"....Please Help us reveal him to show everyone what that entire smile is and means to all Cancer patients and families dealing with the sadness, pain, problems, and everything that comes with having a child with a life threatening disease.....

God Bless our Children They fight so hard everyday....Please especially pray for josh, Ray, Zoe, and Micah, that they will win their fight...

love
Melissa ( trying to relax and watching House MD more doctor shows geez I sense a theme lol)

Tuesday, April 18, 2006 7:30 AM CDT

Good Morning friends and family

Today Donovan will have another Echo done to make sure there still isnt any fluid surrounding his heart...Then we are off to clinic to hang out for hours yeah!!!

Donovan has been in good spirits all weekend...He is still on his pain meds from his surgery but overall he is doing pretty well...He has no idea what has happened to him...

Just wanted to send a quick not before we are off to clinic..

Thank you all so much for checking on us and really supporting us through really difficult time...

Darren Left sunday to go find work..So far nothing but hopefully in time he will get something...He knows more people in INDY...

Donovans picture is only a quarter of the way revealed...Please donate what you can...If everyone put in 5 dollars everytime they checked on us we would be done with his picture. Thank you all so much for your blessings, messages, cards, and donations...

This is so hard for us to even ask..WE are the ones usually giving and its a vulnerable feeling to have to rely on others to help us...But When it comes to Donovan we are letting our pride down and basically leaving our future in the hands of those we dont know, and to GOd...

IF the picture is difficult to load and you would prefer to donate in other ways our address is at the bottom of the page at Alexan Farms...

With Love and much gratitude

Melissa, Darren, Dylan, and Baby Donovan

Sunday, April 16, 2006 11:52 AM CDT

Happy Easter and Blessings to all of the Families out there that continue to check on our sweet Donovan and family...

There are so many things about today that really make you think about strength, love and faith...

Sometimes I feel the love and faith so much and others I feel as if I am in a deep hole and there is no way to get out...

Our family is very blessed to have DOnovan...He is the light that keeps us going...Dylan is our light that physically keeps us going LOL...

Dr K called me yesterday with the final results from the pathologist and told me that CANCER did not take my sons left testical and everything that surrounds it..

It was a virus called mononucliosis..This virus due to the medications for post tranplant kids was able to invade his body and basically take over an entire area and make it completely unfunctional and dis-eased to the whole body...There was nothing else to do but to remove it...

We are now weaning Donovan off of his immunosupressant drugs for fear that his body cant take any more fighting and for fear that his Leukemia can come back..The drug that he is being weaned off of is the one that has also made him a furry little teddy bear its called Cyclosporine...We have already cut the dose in half and will find out more tuesday what the next step will be...

I am afraid to be off of these drugs because they also help with graft vs host disease..This is where his new cells can attack his old and cause even more problems...

I have faith that Dr K knows what to do and we stand by her 120 percent...

But we are fearful I guess thats normal..I personally am feeling much better today...Donovan had a great walk outside and Dylan got to play in the water and ride his bike...We had a lot of fun...We are doing easter eggs after lunch and after naps...That should be a lot of fun...

Many thanks to those of you who CONTINUE day after day to check on us, leave message, send cards, call me, donate to help us through the tough times, and have faith in our Donovan that he will beat the BEAST OF CANCER once and for all...Thank you thank you thank you....

With Love and Blessings to you all on this very special day

Melissa and Family

Friday, April 14, 2006 11:31 AM CDT

WEll I was wondering how long it was going to be before my emotions got the best of me...Well turns out it was this morning...

After a long night a awful nightmares again, I woke up in tears and they pretty have been falling ever since...

I thought I would go work it out on the treadmill and the tears were falling. My friend Ruth gave me a call and I absolutely lost it...The tears were flowing so hard...

Thank you Ruth for staying on the phone as long as you did because the tears turned into smiles and laughs...

Of course then I go in to hand in my information because we have to move to a less expensive place and the tears were flowing again...The poor lady in the office...She just gave me ahug and I just kept crying...

Finally i got home and took a shower and the tears were flowing even harder...

WEll now its 12:00PM I hope the rest of the day isnt so tearful..

My thoughts are flwoing as well as the tears and I just wonder when Donovan will get a break...I wonder when Cancer will stop taking over his body and taking everything away from him, being able to be a baby, a toddler, and a life without so much pain and suffering...

His smile lights you up and as I walked in the door that is what I walked into a Big Smile from the teddy bear...And the tears were flowing...I know he doest know the difference but he certainly deserves some good days...

His testical site is bleeding and we have to get him to clinic...He is also running a temp so we have to figure our why that is...usually they wont do surgery when a child has a temp becuase of the very high risk of infection especially in a transplant baby...But Dr K insisted and so did we.. So now we just have to figure out what is going on with him...What a sweet munchkin...Thankgoodness he has such a great disposition...

That is our blessing... I know there is a light at the end of this cancer tunnel and I cant wait to see it....

Never give up as our friends matthew and nancy adn the gang say and as katie and our other friends say we get knocked down but we get up again and again again...

Love

Melissa

Thank you so much for your loving thoughts, messages, prayers, and generosity...Our family is so thankful and we feel the love out there for our precious baby donovan and our family... Thank you

Thursday, April 13, 2006 8:19 PM CDT

More updates dr K said that his Spinal Tap looks normal!!!Yeah


More updates...I just got off the phone with Dr K and she is just so cool calm and collected. She said that his testical could have been two things leukemia or a type of virus mono something I cant pronounce it let alone spell it...She said we did the right thing today by having it removed..ANd either of the two things are treatable and their isnt anything to worry about tonight...WEll I feel better...ALSO she already tested him eraly in the week for this virus and he was negative so its most likely luekemia..Thank goodness...I cant believe i just wrote that...Isnt that so sad...I am glad that I know its leukemia..I know its cancer and now I know his testical is gone and hopefully so is the leukemia...I never thought in a million years thats what I would ever write let alone ever think... She just landed in minneapolis called us a frantic family and was so calm she is so awesome I just am so glad we have her as our doctor....


WE ARE BACK!!!!


Well Donovan was a Champ as always....However it has been a super long day so forgive me is this is convoluted in anyway...

Darren took Donovan to clinic at 8:30AM...I was alseep having serious nightmares...Which I wont even go into because they were so scary and I am just glad they are over...

I got there about 11 with lunch and DOnovan was cheerful...He was NPO ( no food) but he was still very cherry..However he then got unhappy and decided to spike a temp 101.2.. So cultures were drawn and a chest Xray was ordered...

Turns out his left testical and the epididomas ( i have no idea how to spell that) was very much abnormal...The doctor however not being an oncologist would not comment on what exactly he was dealing with...CAN YOU SAY VERY FRUSTRATING... The urologist let us know that the outer part of his testical was something he has almost never seen and completely abnormal...The testical too was very abnormal and full of different kinds of lymphoids...whatever that means...They are sending several specimens to several pathologists to really figure out what the heck is going on with donovan...THe best scenario for him at this point was to completely remove the testical and the epididomas which surrounds it...SO now he has one...

What can I say I have more questions than ever...We have no definative answers on whether or not the specimens are going to be malignant or benign but all we know it was abnormal and not a functioning or well looking testical or epididomas...My poor baby...He is not feeling the best now he is pretty sad and I am going to put him to bed so he can sleep off the pain...

In the back of my mind I was hoping that this was going to be very clear cut...An isolated relapse in his left testical with Leukemia and they remove it and thats it..Now eveyrthing is up in the air again we dont know what we are dealing with and it could be something totally different and worse...What do you do with that.,..Even the toughest kid in the world can only handle so much ya know....So I am so sad, scared, afraid and so afraid because we just dont have nay answers...Its like the very beginning again...

My sweet little baby is just hanging tough and is making it known that he will OVERCOME with Gods Grace he will...I know he will...

Thank you ALL SO MUCH FOR YOUR PRAYERS AND PRAYERS and MESSAGES ANDS CARDS AND EVERYTHING....I cant even express our gratitude for some many of our dear friends going through much of the same thing and opening their arms to our family and for our Donovan...(insert flowing streams of tears)...

love
you so much everyone

melissa

Wednesday, April 12, 2006 10:56 PM CDT

TOmorrow is the BIG DAY!!

I am a little freaked out..Today was a day of running around doing errands and trying to figure out what the heck we are going to do about being here..

WE are freaking about Donovan of course which is really disturbing and just cruel...Both Darren and I are really just plain scared...What is going to happen to us our family???

WE are trying so hard to stay positive but our days are becoming more and more unpredictable...How do you cope with such uncertainty and not just uncertainty of the future of your baby, your life, how you will live, how things are just going to be...

Tomorrow is going to be scary and it all starts at 8:30AM Donovan becomes NPO (no food) gets hooked up to fluid, we talk with pre op, and at 1:30PM we go in to Pre-op to get him ready...Surgery at 3:30PM.. They will first biopsy both testicals, and if they show leukemia they will remove them...So far its only the one that is of concern. They will also being doing a BMA ( bone marrow Biopsy) LP which is a spinal tap to look for leukemia in his spinal fluid and brain...

Its late and I think I will need an extra AMbien tonight...I think darren might too...He has already told me how freaked out he is and he never does that...

Please please please pray for our family, pray for donovans health and recovery, our ability to cope with the uncertainty, our finances, and overall ability to stay positive and hopeful that our little boy will grow up and have a life without pain and suffering...

He on the other hand has been just pure sweetness today...He was not up to speech therapy today but after he woke up...He just smiled and smiled and smiled all day.. I think he knows and he is trying to make us feel better...What a teddy bear... Here are a couple pics from today of the teddy bear hammin git up for the camera...

God Bless our children tonight

love
Melissa and the gang...

Tuesday, April 11, 2006 7:40 PM CDT

Hello

We are just getting settled now that we are back from clinic...another Long day...

Donovan was his cheery self with all the nurses...He just loves to flirt...He is so sweet and has got to have the best disposition for someone in his situation..He is just so precious,calm, smiley, snuggly, and pure joy to be around..

I guess that is why it is so hard to see him suffer the way he has for so long..We have all suffered through this with him and maybe he will never remember or maybe he will...Who knows...What I know is that I will never forget.

Today at clinic was pretty typical, vitals constantly, IVIG, and a thorough check up...

However, today Dr K. told us that Donovans left testical probably has leukemia in it...She scheduled a biopsy for thursday and if it turns out to be leukemia the doctor will remove his left testical...they are also going to do a Bone marrow biopsy and spinal tap just to cover their basis for anything else ( maybe more relapsebut somewhere else not likely though)..

Dr K is pretty convinced that Donovans left testical is cancerous since the ultra sound looks exactly the same as a week and half ago despite the medication the urologist put him on...IT has also changed in the way it feels...

It will be an outpatient prceudre. He will most likely not ever notice the difference for a very long time and it is unlikely that it will go to the other one... But of course its always in your mind...

I am feeling pretty sad today for DOnovan...Even though he wont know the difference for a long long while...I just feel such pain for him...I dont sleep, I am anxious at all times, panic attacks, nightmares, but for a few hours a day I feel at peace and that is when I am sitting with Donovan and he is happy, entertained by his big brother, laughing hysterically, repeating mamamamama and cheesying up for us to just adore and take pictures..

Thats what keeps me going...


Please help our family through our fundraiser or through other means...NOt that we didnt know this before hand...But our hope was to be home by the end of may early June and Dr K wont release Donovan for quite sometime...Not that I blame her.. But I am scared and unsure about our future here......Let Donovans fight be heard... Tell his story of fight and how he is still beating the odds...

This has been so hard...I dont even know how to explain the despair and agony I feel in my heart everyday not knowing what will come next...And now that we arent going home soon, I am not sure when we will be able to get to that spot where cancer will be a thing of the past...

WE know we are here with great doctors, and surrounded by a group of families that fight just as hard as we do everyday for our childs recovery and feel comfort in the faith of everyone that check on us everyday, leave messages, send cards, make donations big and small, and give us that bit of hope to keep us going...

Thank you,

Donovan is strong and he will make it through this too...Thats what kids do...He doesnt know any other life but this one and he will just continue to fight like the cancer warrior he is and always will be...

God Bless our children

Melissa

Monday, April 10, 2006 9:41 PM CDT

We are home!!! Yeah...

Tomorrow is our big clinic day and hopefully will get the tests that Donovan needs to rule out the "r" word...He was pretty wiped out but it was so beautiful out we were able to get him out for a walk to visit friends...

He is sleeping peacefully and getting all of his meds...He now has 4 infusions, and 10 orals to take tonight..I swear the list just keeps getting longer and longer...



Quick Update: 2:35PM
WE got the heart echo tests back and they seem to be fine. No more fluid...Yeah

We also got some preliminary results back from the ultrasound of Donovans left testical and it hasnt changed since his last test on monday...So now I am really starting to worry.. The urologist isnt calling us back and the only option now looks like we are most definately going to get a biopsy done...that of course freaks me out becuase the first thing I think of is Cancer relapse...

I am freaking because we have so many worries and its just hard to try and balance the many things you have to and try and manage how you are going to somehow maintain some sort of calm...I dont know how we are going to manage to stay longer..Things are tough as it is let alone that worry...

Please remember that our fundraiser is still going strong and that any amount helps...DOnovans true self will be uncovered and you will see the light in him and the strength that he has to fight all of this as he is the true baby warrior...If you cant reach the link please know that you can also make a donation by check to the donovan foundation and mail it to the address at the bottom of the page to us at Alexan farms...I am sorry if it has been a pain...


Good morning from 5200

Still here and still hoping (crossing everything) that we will get home today...But who knows...

Donovan still has quite a few things stumping the docs.

BY THE WAY HE WAS 16 MONTHS old YESTERDAY!!!!My baby is getting older but not bigger...Its so weird and so sad... BUt I know he will eventually catch up...

Donovan felt pretty good yesterday..He was hamming it up with everyone and just having a good ol; time..He was just the cutest and he had one of his favorite nurses Andria to really keep him laughing...thanks Andria...

Grammie stayed with donovan the whole day yesterday while Darren and I and Dylan had some alone time..We went and visited some friends in the neighborhood, our dedar friends shannon,pete, coop and the gang...Dylan Loves being there.. Shannon has three boys who are just as happy to run around be a boy like dylan...He has so much fun over there...And cooper after just getting released a couple of weeks ago is doing great..

So I stayed with Donovan for the rest of the day and night and did really well...His bely however grew 4 cm since the day before and we just dont know what is going on...

He had his ultra sound and echo of his heart this morning and hopefully it wont show anything so we can go home...I tried really hard to get some info out of the tech but she wasnt having it...SO i have no idea what is going on...Which freaks me out..."it really freaks me out when the tech says you have to wait for the doc to give you the results".. YIKES WHAT THE HECK DOES THAT MEAN!!!!!!

Anywho...This will be continued but I wanted to give you all a quick update about the teddy bear...

love
melissa

Saturday, April 8, 2006 6:23 PM CDT

Hello all from 5200 still


here is a quickie: its almost 11pm and darren just called to tell me that one of Donovans lines is infected...what a bummer..I am not sure what this means now...I hope we dont have to stay longer....

Donovan has been in pretty good spirits all day...today was hendricks motor racing day.. So the pit crew came to say hello. grammie and Dylan got in on the festivities too. Dylan and donovan had so much fun together...dylan played with donovan in the crib it was so cute...

Cardiology came today and they only were able to pull a couple mililiters from donovans heart catheter which is very good news...He had another echo and it showed no fluid around his heart...YEAH...So they pulled the catheter out...

Scary thing is it can happen again at any time but he will probably have weekly echos from here on out...

He is still having some other issues: his testical is still enlarged and Dr K came to see him and she isnt sure if she wants to biopsy it yet but she is thinking about it...Also he is having a lot of problems with his bowels and they are trying to figure out what to do about that too...His temps have been going down but then spark up once in while to 101-102f... Not sure why this is happening but it could be from a possible lung infection that was shown in his Ct...

But overall the teddy Bear is doing great...He is laughing adn giggling and just being absolutely adorable...WE might even get released as early as monday if all goes well...

thank you so much to all my friends and family and new friends for donating and the great cards, and messages that you all have been leaving...it is so appreciated and really lifts our spirits as well as takes alot of the stress away...Its incredible how hard taking things day by day is..You never know what could happen...Its very scary...especially when you are looking at a sweet innocent little baby...and just wishing that this would all just go away...

Please continue to help our family as best you can we have no idea when we will go and there is no telling when or why something else could happen with Donovan...So Dr K wont release us for sometime...

Please continue to pray for our friends near and far that they are comforted by our prayers and that they feel the presence of God by their side always protecting them..Thats what I know for DOnovan and know that in Gods time he will be healed...

love

melissa

Thursday, April 6, 2006 11:49 AM CDT

Hello Friends and family


friday: quick update, donovan has been pretty much alseep all day today..He did great for his CT scan...
It showed some infiltration in is left lung (infection) and a lot of poop everywhere including lots of air, which would explain his huge tummy...Urology stopped by to see his testical and he his happy that it has dropped in size and says that hopefully it will be normal by monday...

Cardiology didnt stop by yet...They are going to try and pull more fluid tomorrow from his new catheter...If there continues to be fluid we will stay in the hospital and if there isnt we maybe able to have a short stay...Hopefully nothing else happens with all the other stuff...

Sorry so short.

thank you so much for all of your prayers and many messages, as well as your generosity...

Quick update as I am waiting for mom to pick me up... Donovan did great through his procedure.. The cardiologist pulled over 130 ml off of the sac around his heart...over four ounces of fluid came off of his heart today...That is the same size in density as his actual heart. SO it is like he had two hearts in his chest...That had to be so uncomfortable..

Tomorrow he goes in for his Ct scan to lok at his pelvis, abdomen and chest..They want to see a clearer picture to see if there is some sort of infection possibly fungal...THey raised his fungal meds just in case...
He has been ahving low grade temps for a couple weeks now but his temp has now gotten higher it is around 101.2...So they sent cultures and all the normal things they do when kids get temps and are immuno compromised...


Also if you are having problems getting the fundraising site you can send a check to the donovan foundation to my temporary address located at the bottom of this page at Alexan farms...
I am typing from the infamous computer up on 5200...

Donovan has what is called pericardial effusion. Today his echo looks like he has moderate to a large amount of fluid around his heart...He will have a tap done ( a tube placed in a particular part of the sack surrounding his heart) to drain the fluid. his other organs have become stressed because of this and it is crucial we get this done today...His liver has increased in size by double and it is getting the most strain from all of this...Good news is that there isnt any fluid around his lungs...

Donovans line coming from his heart sac is on the right of his central line and looks just like it only the line is very tiny...Now he is full of lines and other thing coming out of his tiny chest...(sigh) My sweet baby.. When does this ever stop?

Folks this means that darren wont be able to go home to get the work we need to keep the funds coming in...

So if you can please check out our great fundraiser for Donovan.. It will reveal to you a Face full of more life, strength, hope, spirit, and a face that has beaten odds after beating odds after odds...Any amount helps so please know that every cent counts...

He is still having other issues with his left testical...

Last night he had to have blow by oxygen because of the strain of the fluid so I am glad that this procedure will be done no matter how risky because ultimately he will feel better and hopefully progress in other ways faster...


ps: boy does he love those green toothettes again...
Love

Melissa ( trying hard to breathe, breathe breathe and praying hard for my precious baby and the ability for us to stay here without having all these other issues to deal with...)

Wednesday, April 45 2006 5:17PM EST

Quick Update Donovan is going to be admitted to 5200. his heart Echo showed fluid around his heart in a moderate to large amount.. Which can attribute to his enlarged stomach...Its been enlarged for so long and lasix seemed to work but they are just not doing the trick now...

We talked with the radiologists and tomorrow Donovan is going to get a chest xray to make sure the fluid hasnt travelled to his lungs and then another echo...At that point they will take another look at him and go from there...They will probably do this for a few days...

My mom is also not feeling well her legs are getting worse and worse and she is unable to move on eher legs because of the severity of pain so she is going to Duke ER to find out what is going on...Hello Drama...

We are definately not going home anytime soon now...

Donovans testical is till on the large side but not as large as it was before..

His Ct scan tomorrow might not happen due to his heart problems taking precendence over the CT scan...

So right now as usual Donovan has us on our toes and we are in wait and see mode..

SIGH, SIGH, SIGH, SIGH,

Melissa

Monday, April 3, 2006 5:33 PM CDT

Good morning everyone. WE go back to clinic this tuesday morning and of course its our long day...Donny's teste looks about the same but hes only had two doses so far...So we are going to be patient...

PLease lets not lose the momentum for our Fundraiser...Donovan has had a tough road and it means so much to us that you are all sharing what you can to help us...PLease let all your friends know if you already havent...We have a bit longer journey here than we thought and ever cent counts...!!!

Hello Friends and family

We just got back from clinic and found out that Donovans left testical is in fact 5 times the size of his right....The radiologist, urologist looked and we are not sure exactly what it is..The doctors all like to think that it has something to do with their specialty, i.e. urology says UTI or some other type of infection, oncology says malignancy...

Well the news is that Donovan has extreme inflammation in his left testical and the outer wall too...It could be casued by alot of things, his drugs, bacteria just to name a few...and of Course Leukemia...

the doctor prescribe him a common antinflammatory for ten days and will check out on friday if it has gotten smaller.. At this point in time, they are not going to biopsy him until they see him friday and how he has responded to the antinflammatory...

so for now we are still wait and see.. Which is always fun ( sigh and breathe)...

The ultrasound looked scary you could immediately see the difference in size....

So the next few days we will wait and see as usual with donovan he likes to keep us all on our toes...

For those of you who havent seen our fundraiser on this page its up on the front page in blue and all you do is click it and reserve the tiles...YOu can pay by check or debit/credit cards...

For those of you who have already donating our hearts are full of gratitude and joy that Donovan will get the chance he needs to really get well...

love
Melissa

Monday, April 3, 2006 1:09 PM EST

quick update: this is how are day will follow..
1. 1:45 get weighed in
2. go to pediatric radiology and have an ultrasound done
3. Check back into clinic
4. 3:00PM have Biopsy with Dr Wiener (lol) I thought they were joking about his name....

Another Day ANother Day post transplant friends and family..

Well we are back from clinic...Of course we got there just to be weighed and were there forever...Thankgoodness darren was here with me because I took a class to help me release my emotion through art.. DOnovan was another half pound heavier today...Not good (sigh) His blood pressure was amazying fine ( not sure how that is possible) His temp on our thermometer was 100.2 and theirs said 98.9 (have no idea why probably because theirs is under the arm and I dont think it gets a good read) His testical is still pretty darn big...

1. SO they gave him lasix because of the weight gain
2. they drew cultures for possible infections
3. Tomorrow we go in for a testical Biopsy ( SIGH ) (tears)
they are not sure what is going on but they also couldnt find his other testical today either and the worst scenario would be that he has an isolated relapse in his one testical and it would then have to be removed...Its doesnt mean that he would have relapsed everywhere so I guess thats good..But there are so many questions running around now and donovan has been such an unusual case it has the docs pretty puzzled...He and Micah are really giving the docs a run for their money...
4. Tomorrw we go in to pediatric urology and have a biopsy done thankgoodness its an outpatient procedure...
5. We will get the results hopefully by tuesday but maybe wednesday..
6..So now I will try and be as patient as possible and know that GOd is with us and is gracing us with his strength and hope that all will be ok...And that the biopsy doesnt show anything...

With much love and gratitude for those of you who are helping us,

Melissa

Sunday a day to reflect and be thankful for all we have..I know lots of you folks will be in mass, church or wherever you worship and I ask that you include DOnovan in your prayers...Praying that the doctors will be wise in their choices in how to treat him and find out why he is uncomfortable and having problems, pray that our fundrasier will be successful so we can stay longer without worries... Darren will be leaving all of soon to see if he can get some work...This is very hard for him and I..He has been here practically the whole time and he doesnt want to leave but we are really left with no alternatives..Pray that he finds work and that he will be back quickly to help me and the family...There is alot of worry with Donovan: between making sure his labs are drawn at the right time, giving oral meds, feeds, IV's, clinics and just the daily uneasiness of him not feeling well is extremely exhausting by yourself..PRay for our family that we will all come out of this ok..

Sunday, April 2, 2006 8:27 AM CDT

Another Day ANother Day post transplant friends and family..

Sunday a day to reflect and be thankful for all we have..I know lots of you folks will be in mass, church or wherever you worship and I ask that you include DOnovan in your prayers...Praying that the doctors will be wise in their choices in how to treat him and find out why he is uncomfortable and having problems, pray that our fundrasier will be successful so we can stay longer without worries... Darren will be leaving all of soon to see if he can get some work...This is very hard for him and I..He has been here practically the whole time and he doesnt want to leave but we are really left with no alternatives..Pray that he finds work and that he will be back quickly to help me and the family...There is alot of worry with Donovan: between making sure his labs are drawn at the right time, giving oral meds, feeds, IV's, clinics and just the daily uneasiness of him not feeling well is extremely exhausting by yourself..PRay for our family that we will all come out of this ok..

Today DOnovan will go to clinic we got one day off yesterday at the last minute...YEAH.. However we will be looking for many things today: his hemoglobin was down a bit so he might need blood (I hope not and dont forget to try and donate donate donate blood and platelets), His herniated Testical, his potassium and magnesium very important that they dont get any lower, his weight, he was running a low grade temp all day yesterday 99.7, he was completely uncomfortable all morning long, and maybe they can find a way to make him less uncomfortable...I think thats it...

Who knows...This morning I was doing meds and I kept thinking I was forgetting something...His antibiotic was stopped and it was weird not giving it...

Today we will see how he does...I just changed his diaper and not to be too graphic but his testical is very large again and I can only imagine what thats all about they say its extra fluid but geeez how uncomfortable..

God Bless our children today and everyday...

My dear little friend Alexia is leaving 5200 tomorrow and we are all very excited..Please let her know how far she has come...www.caringbridge.org/southamerica/alexia


Love Melissa

Friday, March 31, 2006 9:29 PM CST

Quick update: I realize that the donation website has had a few bugs so we are fixing it.. Please keep trying I know its probably fustrating...But the help is so appreciated... Keep trying and let us know if you reserved more than you wanted to and we will clear them so others may reserve them.. Thank you so much for your understanding...

Hello Friends and family

WEll lets see where to begin with the day...???

DOnovan had his usually scheduled clinic day...He was still very bloated and uncomfortable...He had speech/eating therapy this morning and did ok considering last time he screamed for an hour last time..

Donovan weighed in today a half pound more than yesterday and his hemoglobin was trending down and he might need a transfusion by sunday...He hasnt had a transfusion since surgery and before that since a couple weeks before we left the transplant unit...I hope he wont need it...They are going to do a type and cross on sunday ( which means they find the appropriate blood type to match him)

His electrolytes are holding low and steady but not scary low so the docs are not doing anything about that...

Yesterday I noticed that one of Donovans testes looked very large...Unusually large when I changed his diaper..I had the NP Sue to look at him and of course it was rather large...It looked like a herniated testical...Basically it is filling up with excess fluid..I am not sure what to make of this because bad things can happen but rarely...

Well Donovan has been so rare this whole time you just wonder wonder wonder... I am trying really hard to dwell on it...But it was rather alarming to see...Sue made the swelling and fluid go away and now they are going to be loooking at him everyday that he goes in...This is very typical for the metabolic patients but not cancer patients...

Donovan has been very fussy since we got home and we tried everything to get him to calm down but he was just not comfortable.. His belly wasnt as large but he is just very uncomfortable which makes all of us uncomfortable...

Sunday we go back in to be cjecked tomorrow we just go in to get weighed...Hopefully he hasnt gained anymore weight...They are just not sure what is going on with him..They really are puzzled which is not comforting at all but I know they are working hard to figure it all out...

PLease pray that the docs can come up with answers and that Donovan will feel better...PLease also pray for all of our friends here and far that they will feel Gods presence every step of the way even during the most difficult...

love

Melissa

Friday, March 30, 2006 7:32 AM CST

Hello Family and friends


I wrote this entry a month ago and I was embarassed to really share it with so many people. So I wrote and left it up for about 1 hour... I then erased from journal history.. But I think that it heals me to know that some how when you read the little successes or even minor detours you will get a glimpse of struggle that we face and that many many of our friends here face as well as all over...

Hello Friends

WElcome to day PLus 108??? Warning this is really long..But wont be up for long...Its way too much info but I thought I would put it out there anyway...Atleast for a little while that is...

Its been a few days since my last update..I am sorry.. Its been a long few days I suppose... Considering longs days are subjective...

My lonesome paradise will soon be over... Darren said he and Dylan will be here late tomorrow night...it will be odd to have noise in the house again.. Its been pretty quiet...I like the quiet but not this quiet...

I am excited to see my honey and my sweet dilly bar..I think donovan will certainly enjoy the company.. I think he is getting bored with mommy. SO he comes up with new ways to really freak me out..

Donovan's feeds are about the same...Slow and steady.. He gets such a small amount its amazying his weight hasnt dropped...I think its probably from all of the fluid from his TPN...Thankgoodness...

WEll Donovan decided to get H Pylori...Its a bacteria in about 80 percent of us and usually doesnt harm us except when you dont have an immune system..IT is treated with 3 different medications.. YEAH MORE DRUGS!!!! They are all PO Drugs by MOUTH DRUGS... YEAH!!!

WEll how about this he has a handy G TUbe...So all the drugs can go through that...Yeah!!! big saver....

Donovan is still wretching but less since the docs added a med called baclafen (SP) which helps lessen the mucsle contractions in his stomach and esphogis...That worked like a charm. LIttle did I realize ( too many things going on, and insert Dylan would say "DUH mommy!") thats a muscle relaxer... So DOnovan had PT on thursday and a new drug to help him eat but cant move at all during his PT because of the drug... That was sad... He is almost 15 months old...HE cant hardly bend over to get his favorite toy ( insert tears)...

That night Donovans new drugs for this bacteria were put into his expensive new tube and one of the new drugs clogs the tube...Nothing worked to unclog the tube.. I just knew this was bad...So I tried the handy dandy Coca Cola trick but that didnt do it...In fact nothing did..So DOnovan didnt get any of these great new drugs to help him and even more scary his tube was out of commission...His new drug that caused the clog Biaxin granules... I knew Donovan would get better without it so I gave it to him by mouth and he gagged and wretched and that was even more awful... ( Insert more tears)

Donovan got more and more bloated and gassy since his tube wasnt able to do its job and allow not only food and meds in but gas out.. So he cried and cried and was very uncomfortable...

Goodnews I actually got his tube unclogged but it took about a day and a half of just warm water...The tube is now working yeah...Food, meds, and gas out...

Since this has been an exceptionally long entry already I wont even go into the my breaking point this morning.. ( what a cliff hanger eh?) all that TV series watching.. I think maybe I will just list a couple...

This morning:

1. Quick visit today...Nope 6 hours... Yeah
2. Donovan didnt get any feeds ( no food again )
3. Donovan woke up wretching again and gagging
4. Tried to give Donovan his much needed meds by mouth, gagged and wretched more...
5. Talked with Darren He didnt think he was going to make it tomorrow... ( he called back he said he worked it out)
6. Didnt get a chance to eat breakfast...had a banana...
7. Forgot Donovans Blood draws on kitchen table ( means, two more hours added to our clinic visit)
8. Donovans tubing on his cyclosprine broke on my way up to the fourth floor for clinic and poured blood everywhere ( but I DIDNT KNOW IT)
9.. I am now known as the girl who let her babies blood drip all over clinic and in the elevator, all through the hallways and into the fishtank room ( isolation room for transplant kids)
10. Donovan needed magnesium not bad until they told me it would take over an hour to administer and it took longer than that just to get it...
11. My entire family is in COnneticut with my brothers new baby and I wish I could be there..
12. DIdnt bring the DVD player and hung out in a room for over 6 hours...
13. Forgot Donovans tubes for feeding and meds...
14. Boston Market doesnt have a drive thru..Home cookin sounds good.. Especially since I am so hungry..

So now after all of that I am still tearful but because I am glad Donovan is getting what he needs, his tube doesnt need replacing, he got one feed, he is now taking a much needed nap, I am watching the last episode of Lost ( my new series), ANdria from 5200 came to visit, KAren brought me Dunkin DOnuts ( yeah ) wendy gave me a strawberry hershey kiss ( good, but very strange tasting I might add)

Most importantly, Donovan is smiley and such a blessing to be around that I find it hard to write all that I just did (more tears). He fights so hard and I complain.. That is why I havent updated... I might only leave this post up a few hours since I cant even believe I have actually written this out...

This is from yesterday

ANother day another day post transplant...Holy cow I think we up to day 140...

Donovan had his usual daily labs drawn his potassium was a little low but they are going to wait until tomorrow to do anything to see if it comes back up on its own..His weight is about the same...His belly still looks the same distended and uncomfortable...

Not much else going around here except for the usual thoughts of what if's that could drive you crazy...

Donovan hated physical therapy today but did better than monday...He is getting stronger but his belly is so big he cant move around it...I remember those days when I was really prego and couldnt see my feet let alone put shoes on..I can only imagine what he feels...

He will absolutely not take anything by mouth..I tried to tempt him with vanilla icecream with chocolate syrup ( yummy right?) well he didnt want to have any part of that...Its pretty sad to see that his progress has been so slow and at points he has regressed...I know its to be expected but it is so hard to watch your baby go through so much and you not be able to do anything but try and comfort him through it...When he is gagging and retching the docs dont want us to stop the feeds they told us to just comfort him..Its really hard to watch his tears just run down his face while he is screaming, gagging, and retching...My mom ( grammie) just gets so teary and doesnt know how to help and it makes her so sad too...

Tomorrow we go back to clinic as usual but this is our regular scheduled clinic day so its actually longer.. Hopefully it wont be too long...

I got a chance today see my special friend Alexia out on pass at the APARTMENT...SHe looked great and I was in tears just to see her so happy to be home to see her family and cata her nanny...It was just wonderful to see her so happy..Yeah ALexia the princess warrior... I also saw Cooper today riding on his tractor he was looking good..Way to go coop...


God Bless our Children that they will feel the Grace of God beside them at every moment...Thanks to all my friends, family, and those of you I dont know personally...I am honored and humbled by the response thus far and know that Donovan will overcome this and we will eventually get back home and to some sort of normalcy...

love

Melissa

ALSO PLEASE TAKE A CHANCE TO CHECK out OUR NEW FUNDRAISER AS MOST OF YOU KNOW WE WILL BE HERE FOR QUITE a WHILE LONGER...LONGER THAN WE EXPECTED AND ARE REALLY STARTING TO STRUGGLE...ANYTHING BIG OR SMALL IS APPRECIATED AND EVERY LITTLE BIT WILL COUNT...


WE HAVE TRULY BEEN BLESSED THIS FAR AND WE ARE HOPING TO HANG IN THERE JUST A LITTLE BIT LONGER SO THAT DONOVAN CAN GET THE TREATMENT HE NEEDS SO WE CAN GO HOME...

BLESSING: A GIFT OF DIVINE FAVOR...I just love that defintion...

Wednesday, March 29, 2006 9:32 PM EST

Hello Friends and family

I am overwhelmed by the response so far of our fundraiser...It brings tears of joy to my eyes..Thank you all so much...I hope we can sustain the momentum...

Clinic again today...Donovans weight is still the same..He weighs in at a little over 22 pounds...This is up from the 20 pounds he was just 4 days ago... He had two different Xrays done and both just showed he had a lot of gas and air in his belly and nothing else...

I am not sure what to make of this since I guess its goodnews but why is he so big...WHy is he so uncomfortable and unable to move out the gas...WE leave him vented for hours and it doesnt even make a difference ( the opeing to where he is fed in his belly to let air out)...I dontknow what to think...There has got to be something else going on..He is just miserable and whines all day..And his belly is just enormous...SO much that his bellybutton just sticks out and his stomach feels so hard...The docs keep saying its air in there and it will work its way out..Well I sure hope so...Its so hard to see him so inconsolable.. I just wonder what all that air does to the rest of his insides or his other organs rather... Its got to put some stress on his lungs or other parts...

Who knows...His electrolytes were great today and we didnt have to stay at clinic too long thank goodness...I am especially glad we didnt have to stay too long because we have to go there everyday for the next week..

Well Folks I am off to make some cards and watch a movie to relax a little bit from the hustle and bustle of the day..

God Bless our Children that they will feel the Grace of God beside them at every moment...Thanks to all my friends, family, and those of you I dont know personally...I am honored and humbled by the response thus far and know that Donovan will overcome this and we will eventually get back home and to some sort of normalcy...

love

Melissa

ALSO PLEASE TAKE A CHANCE TO CHECK out OUR NEW FUNDRAISER AS MOST OF YOU KNOW WE WILL BE HERE FOR QUITE a WHILE LONGER...LONGER THAN WE EXPECTED AND ARE REALLY STARTING TO STRUGGLE...ANYTHING BIG OR SMALL IS APPRECIATED AND EVERY LITTLE BIT WILL COUNT...


WE HAVE TRULY BEEN BLESSED THIS FAR AND WE ARE HOPING TO HANG IN THERE JUST A LITTLE BIT LONGER SO THAT DONOVAN CAN GET THE TREATMENT HE NEEDS SO WE CAN GO HOME...

BLESSING: A GIFT OF DIVINE FAVOR...I just love that defintion...

Tuesday, March 28, 2006 6:38 PM CST

Dear friends and family

Another Tuesday another very LONG clinic day...WE just got home...WE were there for 7 hours..Holy cow we are tired...

Donovans counts are great in everyway...(yeah) However, his weight is really up, his blood pressure isnt great, and his stomach is twice the size it should be.. So given all that we just won a trip to clinic everyday, blood drawn everyday, and an Xray tomorrow...( can you feel the excitement) I feel the exhaustion just thinking about it...

Goodnews, Donovan is STILL CANCER FREE...and that is what is most important..Once we figure out the rest of this stuff hopefully he will feel better and we will get to possibly go home...

I got to see my special friend Alexia enjoying the pesces ( fishies) in the fishtank on her pass out of 5200...That was a nice surprise...

ALSO PLEASE TAKE A CHANCE TO CHECK out OUR NEW FUNDRAISER AS MOST OF YOU KNOW WE WILL BE HERE FOR QUITE a WHILE LONGER...LONGER THAN WE EXPECTED AND ARE REALLY STARTING TO STRUGGLE...ANYTHING BIG OR SMALL IS APPRECIATED AND EVERY LITTLE BIT WILL COUNT...


WE HAVE TRULY BEEN BLESSED THIS FAR AND WE ARE HOPING TO HANG IN THERE JUST A LITTLE BIT LONGER SO THAT DONOVAN CAN GET THE TREATMENT HE NEEDS SO WE CAN GO HOME...

BLESSING: A GIFT OF DIVINE FAVOR...I just love that defintion...

Many thanks to my Mentor Ruth for really supporting our family through this..Ruth I remember our talks and it means so much to me that you are supporting us..Thank you for sharing our story too..
Thank you to April for the great box of goodies for the boys and for our family...I hope you like the pic...You too have been such a great support..I am truly humbled and full of joy that so many people have really reached out to us..Our lives ( my family) have been truly changed for the better because of it...

much love and thanks

God Bless our Children

Melissa

Monday, March 27, 2006 11:58 PM CST

Holy cow

Time flies when your having fun eh? Its almost a new day...And a new day brings us that much closer to Donovan beating more odds...

Our Fundraiser has officially begun...Please take some time to check out the site and consider donating to "the donovan foundation" which ultimately will help Donovan and our family with all costs related to his medical care while we are here in North Carolina...WE thought we would be home soon and it doesnt look like Donovan will get that chance yet...He is still having feeding issues, potassium and magnesium issues, fluid rentention issues, gagging and retching issues, and overall discomfort...We arent sure how long we will be here and as frustrating as that maybe its harder not knowing how we will make ends meet...

Tomorrow is our big Clinic day with Dr Kurtberg and hopefully she will have some answers...Donovans stomach is distended and even with the help of lasix it is still hard and very round..He cant even fit into Dylans car seat buckle...His pants no longer fit around the waist and it is quite alarming...All weekend his labs have been great but he is getting more and more uncomfortable...

Thank you all in advance for your generosity ( its so hard to ask for help )prayers, hope, faith, messages, cards, and support for Donovan and our family...Thank you the the Giffords we received your card...Our hearts are full and we are truly humbles by the blessings of family, friends and even strangers..

The defintion of Blessing: a gift of Divine Favor...

Please pray for our children tonight and their families... WE should never have to watch our children and babies experience such pain and suffering...We should watch them coo and giggle and play normally...The families like ours will never have "normal" and when I say normal I mean normal health...We will always be afraid about what tomorrow or the next day will bring, but one day those fears will fade into the abyss deep down in our souls and out will come the sunshine of hope, strength, and the miracle of life from which we could all learn and grow..

God Bless

Melissa

Sunday, March 26, 2006 9:20 PM CST

Good evening Friends

I hope everyone had an uneventful weekend in the realm of of all the craziness called life...

WE had a pretty uneventful weekend...Which to us is just what we needed...Although, tomorrow we dont have to go anywhere near clinic or the day hospital...Yeah...No blood draws, no calls no nothing...Well DOnovan has OT and PT but I dont count those since we dont have to leave the apartment...

Donovan's electrolytes have been pretty stable all weekend...They are between low and high and just good enough to not have to do anything..Yeah...

Donovan has been really trying to communicate to us all weekend...WE have no idea what he wants..WE keep forgetting that he indeed is a regular baby and that sometimes he may just need a new diaper...Go Figure!!!..

With everything else going on you forget the "normal Baby stuff" How unobservant can we possibly be...WE did it like three times...Me, my mom and darren...Poor baby had poop everywhere three times...LOL:)

ANywho are weekend was uneventful and we are hanging in there...Trying very hard not to just lose it...

WE have been here awhile now and its so hard...HARD, HARD, HARD.... I dont even know what it will be like to go home.. This life here has been so tranforming...I am constantly anxious, and wondering what will happen tomorrow... How does life go back to normal without some serious adjustment..? Does life go back to "normal"...

That is the question of the night...

PLease continue to pray for our friends, our friends near and far, for their struggles, anxiety, fear, future, hope, love, faith, and the knowledge that all children are full of great spirit...

OUR FUNDRAISER IS STARTING SOON...PLEASE CHECK BACK TOMORROW FOR MORE INFO...PLEASE HELP OUR FAMILY STAY AS LONG AS WE NEED TO HELP DONOVAN GET THE CARE HE NEEDS TO SURVIVE AND ULTIMATELY BE CURED OF CANCER...

Love

Melissa ( the crafting fool, and watching Greys anatomy love it, like i love shoes) Everyone else is asleep...I will join them soon...

Saturday, March 25, 2006 8:16 AM CST

Good morning,

yesterday was clinic and DOnovan weight was a little up and so we had to give extra lasix which means that his potassium goes right out of his body with his extra fluids...His potassium has been pretty low and we have to make sure we keep an eye on it even though he is getting supplements through his feedings... So we are dropping off blood everyday and if he looks puffy to us we are supposed to take him in...( keeping my fingers crossed that we dont have to go in)!!!

His labs were great...Normal as all of us...Yeah!!!..Thats what we want...His feedings are going at night now but he cant handle all of it at one time so we have to wake up and turn it off for a little while and then turn it back on...

He has been feeling a little crummy...The supplement potassium can cause nausea and diarrea which of course he has and of course thats just what we need when we are trying to feed him and get him strong...So we are just watching him for now... His therapies all week have not gone well..He had one good speech, one good OT and no good PT (3 sessions). POor baby...WHen will he ever be able to move...??He has no strength is his limbs it really breaks my heart... OF course all of this does but to watch him not move at all is so sad...He is a year and a half old...And still looks like a fat 7 month old.. Even at seven months your legs are strong...

I am going to stop the complaining right now...He is right here with me and smiling and watching his new love ( baby einstein...

Serious CONGRATULATIONs TO OUR VERY DEAR BRAVE FRIEND ALEXIA THE PRINCESS WARRIOR for her results on her chimerism test 100 percent donor cells!!!!YEAH YEAH YEAH!!! WE love you... www.caringbridge.org/southamerica/alexia

please continue to pray for our friends near and far...

love

melissa

Thursday, March 23, 2006 12:34 PM CST

Good afternoon everyone out in virtual land

I am sitting here wondering what to do...Donovan is asleep, my art project is on hold due to lack of creative ideas, darren is messing with his truck, grammies legs hurt, WE DONT HAVE TO GO TO CLINIC YEAH, and Now What....
I went to work out and the gym is being painted and getting the motivation two times in one day is unlikely...

Its weird, now you just sit and think...You wonder, day dream, worry, stress, everything...

Donovan is feeling better and had a great session with his eating therapist she got him to eat baby food ham ( wow ) she has great techniques and so good with him..I am so glad...

WE are starting to do alot of meds at home now which is why we dont have to go to CLINIC every single day...Thank goodness... But we do have to drop off blood every morning...

So we are all just kind of hanging out...

DOnovan has physical therapy today..I really hope that goes well...

Thanks to you all that continue to check on us and pray, leave messages, and donate to help donovan and our family...Ruth thank you for your generosity through all this and for the special story of Westin...Wow I am just amazed and pray to see Donovan in that same scenario.

Please continue to pray for our friends near us at 5200 and far back in Indpls and all over that they will continue to do well, maintain, stay strong, feel love, and know we are all here for them.. SPecial prayers to my little friend Hunter who has recently relapsed.. My little warrior friend...PLease also pray for my dear friend Alexia as she is still not feeling like her self and having tummy problems...

TOmorrow is clinic day again and we will wait to see if anything changes for the better..

love

Melissa and the gang

Tuesday, March 21, 2006 6:17 PM CST

welL ANOTHER DAY ANOTHER DAY POST TRANSPLANT AS I ALWAYS SAY

Today Donovan had a great Clinic day.. Dr K was out of town so Dr Szbolcs was there... WE are now down to giving steroids once a day, feeds we can start doing at night and at a rate of 45 then to 50 once he gets used to it, we may go to more oral meds next week... His blood pressure is alright for the most part, and his weight is down ( the doc did say he is over weight for his size but most 15 month olds are alot more active than he is)...His potassium was ok but we are still having to drop off daily labs...I sure hope he holds his own on the postassium side because everytime it goes down it buys us another day hospital visit for 3 hours...Donovan has been smiley and happy pretty much the whole day.. He has been especially smiley when Dylan was acting like a tiger...It was really cute.,..just Check out the picture...


His counts are good and he is still making his own platelets at a normal level and his Hgb is pretty good too at 9.4... His WBC is 4.6... He still has all the antibiotics on board because of the H pylori but he is definately getting better..I am so excited that he had such a great report today..WE are all so exhausted and just hope that we dont have to go to clinic everyday to get potassium.. Its very possible but I pray that we dont have to...

Our Friend Cooper went home today...YEAH YEAH.. He left in the typical confetti fashion out of 5200...way to go Coop..
We also visited many of our friends up on 5200 as well.. My special friend Alexia smiled at me and blew me a kiss... She is truly a warrior princess... Go ALexia your next for the confetti party...I will be there...

I missed seeing our friends Kabir and his family. WE usually see them every tuesday and friday but they are now gone and back at Georgetown..Miss you guys...

Well my dear friends we are feeling pretty upbeat about DOnovans progress and hope it continues...WE wont know what to do with ourselves if we dont have to go to clinic 5 or 6 days a week...But boy do I have some ideas...!!!

Please continue to pray for all of our children suffering, maintaining, and willing to beat whatever comes their way.. Children are special that way the will always surprise you...

Love

Melissa ( watching a great story DVD "Dreamer") Darren ( same thing) Dylan ( wanting attention and not being nice since he doesnt want to watch this movie) DOnovan (watching the movie with us and getting his IV meds down to 3 IVs twice a day now thats great)

Monday, March 20, 2006 8:27 PM CST

Good evening

Its been a long weekend...I just woke up from a much needed nap...Donovan has been in the day hospital for the past four days...His weight was up quite a bit and lots of other things were going on such as eating issues, gagging, low grade fevers adn just feeling yucky...

Dr K upped his lasix, removed his TPN, upped his feeds, and now his electrolytes are all crazy since he isnt getting enough food...So he has had to be in the day hospital everyday getting potassium...Today he double the amount since it was so low... Good news his counts are still looking great...

However, he is still feeling pretty crummy. HE too tooks very long nap when we all got home...He wasnt able to do awhole lot with PT and we had to cancel OT today...His temp went up to 99.8 again...I am not sure what is going on..

But he seems to do alright for the most part so its weird to be concerned but of course being a cancer mom you freak everytime something like this happens, since they could be signs of relapse, dare I even say the words....

Please pray for dear friends that jsut found out that after almost 3 years of chemo and months off treatment their daughter relapsed...This is absolutely devastating to me and my prayers go out to you guys so much....

God Bless our children tonight...

TOmorrow is another long clinic day we are once again in the day hospital...

love
melissa

Sunday, March 19, 2006 10:16 AM CST

Good MOrning

Another day... Another day that is sunny in the ol' south... DOnovan went to clinic yesterday and to everyones amazement his chemistries were great even without TPN... Yeah.. SO he didnt get TPN again last nigth too.. We upped his feeds to 14 hours at the same rate of one ounce and hour...He is still gagging and wrething but its not as bad thank goodness...

I was able to take some time off yesterday from everything and take a class...I took an altered book class its the coolest thing ever!!!...

Came home and was totally wiped out...Creativity really take soemthing out of ya....

I played with Donovan and then decided I should probably eat. So Darren and I went out together while my mom watched the boys... We werent gone that long because I was so tired... I think I went to bed at like 9pm...

Donovan is still having these weird low grade fevers but he is on the right antibiotics now so who knows... Donovan is on his way to clinic again today.. That makes it four times this weeks... LAst week we were there 4 times too... Goodness its so exhausting...I can only imagine what donovan feels... Well I am off to deal with DYlan he is in time out.. porr kid doesnt know how to express himself yet so he hits, kicks, and throws tantrums...

melissa

Friday, March 17, 2006 10.34 PM CST

HAPPY ST PATTY'S DAY

DOnt forget to kiss an Irish Lady or gentleman today..

By the way I am Irish but I cant be kissed ( becuase of Donovan) you can always send me virtual kisses maybe hugs would be more appropriate. LOL....

Quick update little donovan is flirting with a fever...He got to 100.1 and i called Sue our NP and we were both just like lets wait to see what happens...he is around 99.1 right now...So hopefully he stays there otherwise we have to go to the bop room on the transplant unit and that really stinks...

Today we are creeping towards day plus 128 post transplant. Feeding is now 12 hours at a rate of one ounce an hour...Slowly but surely we will figure out what it going on with donovan. I think he stomach and everything attached has been severely damaged by the chemo and now after so long of not eating its not working quite well.. ( well being a very large understatement) But he only has fits a handful of times a day so atleast its not constantly...

Well today at clinic we learned that for the past 10 days yes 10 donovan was supposed to be getting his IV antibiotic 2 a day and he has only been getting it once.. So that could explain why he isnt getting that much better... DUH???? He is also retaining a lot of fluid and his heart rate and blood pressure are really high...So we get to visit the clinic tomorrow and sunday...His weight is also a concern probably the fluids... His counts look great yeah!!! But tomorrow his electrolytes maybe out of wack becuase of the extra doses of lasix...Well needless to say we are a little freaked but we are fixing the problem so we will get back on track soon...

God BLess our kids today that they have a healthy, fun, laugh filled day...

Special prayers to our friend Micah who is still in PICU and having problems... www.caringbridge.org/al/micah

blessings to you all

Melissa

Tuesday, March 14, 2006 11:11 PM CST

Good evening friends and family


quick update HAPPY HAPPY BIRTHDAY TO ANJALI OUR ANGEL!!!!! SOrry I thought today was the 14th and now its the 15th...



Its late and of course I am still awake...Bummer I forgot to pick up my handy dandy Rx from the pharmacy to help me sleep. I still have such problems sleeping...I hear everything that DOnovan does and I get and make sure he is still breathing or not choking or aspirating... So many things to worry about I just cant seem to relax enough no matter how tired I am...

Donovan started out his day rething and gagging but with a smile as usual...My mom is here now and not used to him doing that so she was sad about it...Its very hard to watch...He just cant stop...

His counts are great...He is still making his own platelets and red blood cells. His white cells are a little low but Dr K isnt worried about it since he is on a few antibiotics for his infection in his stomach...

Tomorrow we are going to try and raise the level amount of feed he gets per hour we are going to try and give him an ounce a hour and see how he does for 12 hours...YIKES I AM FREAKED...I hope he doesnt gag all day.. Atleast he doenst have PT tomorrow because i have a feeling we will need alot of baclafen to help control all the muscles around his stomach and esophogis to chill a little...

Other than all that he is looking good.. Dr K is pleased...

Darren spent the day with him at the hospital for about 7 hours...I just couldnt go...I am so exhausted and just so tired of being at the hopsital.. I feel bad not being there with him but I think I would have lost my mind If I went.

Special thanks out to our fellow 5200 neighbors for your unexpected gift for Donovan...I was truyly shocked and so grateful...Big hugs,,thank you thank you thank you... ( insert Tears of joy)
tHANK YOU ALL SO MUCH FOR ALL OF YOUR SUPPORT AND LOVE, PRAYERS, DONATIONS, FRIENDSHIPS, EVERYTHING...MY HEART IS FULL AND I AM TRULY HUMBLED...I ALWAYS LOVE TO BE THE ONE TO GIVE AND ITS REALLY HARD TO RECIEVE BUT I KNOW ITS FOR DONOVAN AND ITS HIS ONLY CHANCE...SO THANK YOU SO MUCH

OUR FUNDRAISER IS ABOUT TO BEGIN SO KEEP AN EYE OUT...WITH THE HELP FROM MY FRIEND URSULA AND HER FRIENDS AND MOSTLY MY BROTHER TAKING HIS FREE TIME TO HELP HIS NEPHEW WE WILL BE UP AND RUNNING SOON...

PLEASE CONTINUE to pray for donovan and for the families that have children with life threatening illnesses...life is so precious..love generously, children can teach us that life is a play by play and you got to roll with it..thankgoodness for our special children to teach us these precious lessons...

with much love and gratitude

Melissa ( watching a movie with my mom i have missed her so much and same with dylan he just keep hugging her and asking her if she was lost since he hasnt seen her in awhile how cute) Darren enjoying some reading time) Dylan ( awake but calming down and watching a new movie) DOnovan ( as sweet as usual and sleeping peacefully with all of his tubes) Grammie ( working on her recipes and watching a movie "just like heaven" how cute..

ps: the movie Dreamer is coming out and it is really cute and shows you that you can do anything and anything is possible....

PSS: I miss you guys in Indy, friends, nurses, doctors, colleagues, customers, you are all in my heart and I think of you often...Something to look forward to when we get home...I cant wait to get back... PLease know that its hard for me to really express how I feel being here...SOmetimes its just to unbearable to describe.. Forgive me If I havent talked to many of you often...

Monday, March 13, 2006 8:48 PM CST

Dearest friends and family

Another day another day post transplant... Yeah....

Today wasnt to eventful.. Yeah I love those days...Donovan is stil gagging and retching but not as hard and not as long...

He had a hard time with physical therapy today though since he is still on steroids and baclafen the muscle relaxer to stop him from gagging so much...

My mom flew in today I am so glad.. Especially dylan he had to show her all the same toys hes had forever but he thought maybe they were new to her...It was really cute he was so excited to see her...Donovan was so excited too he just kept putting his sweet arms out for her. LIttle did she realize but he is pretty heavy...lol:)


I am still gathering all of my mementos for my scrapbooking class on altered books to chronicle Donovans life thus far...WE might have a chance to make two books and if so I am going to make one of both DYlan and donovan and on borthers in general...

I am so excited to do this for him and for Dylan...I sure hope they appreciate it later in life...

I cant believe its been so long that we have been here..It seems life forever...Dr K isnt even sure when she will release us from here...Donovans feeding issues have really put us behind so now I am not sure when its going to be... POor baby has been through so much and he is just getting better but so slowly..Its hard to be patient...

Well Tomorrow is our big and long clinic day so we will have lots of updates tomorrow....

PLease continue to pray for our kids. May the mighty strength of GOd always be with them and may our prayers continue to comfort them...

Thank you all so much for your support this has been so hard and I dont even know how to express it in words...I am the kind of person that always puts on a happy face no matter what and this has been very trying to the point where I have really been on the edge of just breaking down in front of everyone atleast once a week.. But I refrain and try to stay positive for DOnovan and to let him know that I will be here with him no matter what...He is so sweet he just looks at me and I can tell he just cant understand what is happening...BUt He knows I love him as many others do as he has touched so many peoples lives...

Sweet Dreams tonight and may the angels watch over our children

Melissa ( tired and glad to see my mom but miss my dad ) Darren ( preparing the TPN which we were able to cut back a little bit yeah yeah yeah) Dylan ( chillin with grammie ) Donovan ( in bed and the sweetest teddy bear ever)

ps happy birthday to my friends KAbir and Lauren, and my dear dear sister...Sorry I am a little late...

Ps Lauren if you are reading this, is this the first year we dont have a meeting on your Bday or what? except for last year when we didnt have any money...I hope you had a great day with your family..

Saturday, March 11, 2006 8:17 PM CST

Good Evening on a Saturday Night, ( "Atleast I think its a saturday?") It feels like a friday... WEird Eh?

ANywho

Wlecome to Day PLus 120 something I have lost track again.. Today we didnt have to do anything. WE didnt have to draw labs, we didnt have to go to clinic we didnt have to do anything... YEAH YEAH wow does that feel good. The best part of all of that is we dont have to do anything tomorrow either..YEAH YEAH YEAH... Usually we have to draw labs on sundays which means we have to start drugs at a certain time and that is a pain to try and get done when you have a million and half other things going on at the same time..

Donovan had a good day...He hung out with Daddy pretty much all day...Dylan and I had a date.. WE went to lunch and then my favorite place the scrapbook store... I love that place...Its more of a craft store to me now..I am taking a class next week on altered books...I am so excited..I am making a book about my boys...

WEll Granpapa left early this morning and daddy arrived really early this morning and we are all very tired so sorry this is so quick...

Thank you for your thoughts, prayers, and help to our family...

With much love

Melissa

Thursday, March 9, 2006 9:45 PM CST

Good Evening Friends and family

WElcome to day plus 121

And HAppy 15th month birthday to the cancer WARRIOR!!!!

Today Donovan had his 6 hour test at the day hospital to find out about his gagging and wretching...

Go figure he didnt wretch or gag the entire time...Of course the environment is not realistic. He is laying in a bed for the entire time and is usually asleep... So It will be interesting to try on my own...I really truly am just glad that the munchkin did great...I am so proud of him..

My dad stayed with him almost the entire time except for the very beginning and the very end...

Dylan and I hung out most of the day, getting our hair done, going to the park and scrapbooking.. WE had a great time...

DOnovan also had PT today and she brought him a walker and he really enjoyed it...It is very metal and kind of scary looking but he did so well and tried to make the movement of walking.. I thought i was going to cry to see my baby making little steps ( of course not on his own but he is getting stronger and he likes it)

TOmorrow we have clinic again..I swear I am so over it...I am so exhausted...I cant wait for darren to come back to help me with everything...Donovan is very high maintenance in the medication and clinic realm that I am just really tired...

My dad has been great..He watches Dylan and plays with him pretty much non stop...And then works when he can...He is totally worn out too...He even helps with the dishes and laundry and never complains about it... Thanks Dad your the best.

God Bless our children tonight that they feel the comfort of God watching over them and that they have sweet dreams.

Melissa

Wednesday, March 9, 2006 9:30 PM CST

Good Evening

quick update Donovan is 15 months old today. Go Donovan another month....



Day Plus 120

Today was our big 4 hour stint at the clinic to watch Donovan get food and his new antibiotic...

As soon as we got there he started wretching and gagging and just screaming...The Nurses were there to witness the whole thing.. So we actually didnt get the feed started until about 10:30am...

Well we gave Donovan 20ml/hr for four hours..He did great. He didnt even flinch...So much for my severely wrteching baby at home...Total today Donovan had over 2 ounces of food all day... WE were able to go home after I got so antcy that I begged our NP to let us go a half hour early...So she said ok...

Well I am so glad that Donovan did well but sure enough we get him home and he starts wretching again.. WE think its just him trying to recover from surgery and not being able to get used to the feeds yet...

Sue our NP called tonight to let me know that his blood levels are good and that I need to come back tomorrow for another feeding test..This time its for 6 hours...

Oh my gosh...6 hours...Thank goodness my dad is here.. I was going a little crazy after 4 hours... PLus I am actually treating myself to a hair cut...Its been awhile... Dylan and I will go to the salon and hopefully he will be good...My dad will be with DOnovan...And then I will go and meet him there for the last two hours...

Our day tomorrow

8:00Am All of his drugs
9:30am Meet with new Speech Therapist
10:15am Clinic
12:00 Hair
2:00Pm CLinic
3:00PM More drugs
4:30pm Physical Therapy
6:00PM more Drugs

yeah, Good stuff here...But I am so glad donovan was a champ at clinic.. I wonder if he did so well because he was asleep for almost the entire time...

We will definately see tomorrow since its going to be for so long...Yikes...

Also I am excited because our PT is hopefully bringing a stander which helps donovan stand up...I hope she has it and donovan gets stronger...I am so excited to see him really stand up...

WEll good night friends and family.. PLease dont forget to pray for all of our friends this is so hard on families and siblings...Its unequivicable to anything you can possilby imagine and we could all use the comfort of prayers...

Thanks Jan for the great card and for always thinking of us...It means so much to us that you follow our story and stick by us...

love

Melissa ( scrapbooking and trying to enjoy the moment ) Darren ( back in Indy working hard so we can stay longer like dr K wants ) Dylan ( getting tired but refuses to sleep ) Donovan ( as sweet as can be. I am not sure if he could honestly get any darn cuter..He is so cuddly and smiley and such a joy...He truly is so strong and I wish that I one day I will be a fraction of that kind of strength )

Tuesday, March 7, 2006 9:38 PM CST

Dear family and friends


Hey you guys we are almost to 150,000 visits thats right...Who ever hits the lucky number please let me know....


WEll we are around plus 118 days post transplant..Holy cow... We have made it this far...

Todays clinic visit went well...DOnovans counts are back to normal and Dr K is very optimistic that the counts were just a fluke... I explained to Dr K that DOnovan is still not any better than he was last week... SO she ordered another Xray of his abdomen to see his there were any obstruction, gas in the wrong places, stool, anything that could explain his discomfort and gagging and wretching..

WEll the X ray came back completely clear...Go Figure ..Donovan is a mystery.. SO Tomorrow we get the pleasure of going to clinic for 4 hours to feed him so that the nurses and docs can see what he does when he eats and maybe come up with a better solution for him..

WE have tried the gravity feed, the pump feed, small feeds more frequently, feeds over longer periods of time everything...

Tonight Dylan and I left the house and not two minutes later my dad called to tell me that Donovan started wrethcing and gagging again..Two minutes after I started his feed... His weight is great, go figure... He is 20 pounds 10 ounces what a chunker...Dr K went down on his steroids again today so he is almost off of them completely..Yeah another week or so and he will completely be off..I am so excited...His cheeks will slowly disappear..The hair wont and will probably grow until who knows when..

DOnovan is so furry and has the longest side burns that we thought about putting an Elvis suit on him and taking a picture...WHat a great scrapbook picture that would be LOL... What a teddy bear...He was so cute with Dr K just grinning and holding her hand it was so sweet..

Well more news to come tomorrow...

God Bless tonight all of our children and sweet dreams

Melissa

Tuesday, March 7, 2006 5:14 AM CST

Good Morning from the South

Donovan and I have been up off and on since about 4AM. He isnt feeling the best today..In fact he just hasnt been feeling great in general...He is still gagging and wretching. He cries and moans...I gave him his larger dose of his medicine today which the doctor said to do if he was having more problems and that didnt even seem to help much...

I have two more weeks to be patient and then I am going to be really mad... The docs said it could take a while for him to really get adjusted to his surgery and food in his stomach but it just seems to me that he would be atleast tolerating some food by now...HE is still only getting maybe 2 or 3 ounces of food a day barely... His TPN is still 14 hours ( which really stinks) but thank goodness he is getting what he needs..

So today is our big clinic day and we see Dr K and we will find out what her thoughts are...I just hate hearing the same ol' thing over and over again..

His sinus' are still a problem too... Other than all that he is my little teddy bear smiling away...

yesterday he had OT and PT and couldnt do any of them..He tried and just got too tired and cried the entire time..So they both left early...

I know this is a long road but never could imagine how hard it would really be...

Thank you for your support and prayers for us and our friends...Maybe today we will get the much needed answers..

love
melissa

Sunday, March 5, 2006 8:50 PM CST

Good evening from Oscar night central

I love the Oscars...One day I will be there watching all of the celebs walk the red carpet...

DOnovan has had a relatively good weekend...He is still gagging and wretching quite a bit but we are trying to get better at how we handle it..WE try to get him to calm down as quick as possible with the help of his blankie and soothe talking... IT helps but doesnt stop it...

The DOcs say three more weeks of this...Holy cow that is a long time...He is still only getting about 2 ounces of food a day and he is supposed to get about 26 ounces.. So we are a far cry from where he is supposed to be...

On the bright side he has been doing great with physical therapy and we are really proud that he is making strides and getting stronger...

I havent heard from Dr K about the odd labs but I am sure that is because she probably thinks its an anomoly...TOday his counts went way up..

WBC=13.6
plates= 176,000
Hgb 11.2

WHo knows what that is all about.. Thats strange too..WE draw labs again tuesday...COuld just be a weird fluke..Or mess up in the lab...

Darren Leaves tomorrow for Indy to tidy up some business stuff... :(....

WE had a great night with Kabir and his parents our next door neighbor on 5200. It was such a great evening.. A night of great Indian food ( yummy) and conversation...Thank you so much SOnya and Vikram for cooking and your hospitality..WE will miss you all so much.. Good Luck at Georgetown. Keep In touch...

Thank you so much to Caroline and chris for bringing dinner and spending time with us...Dinner was great and is all gone..Perfect amount...

THank you to Ursula and her friends for truly being there for our family and their friendship, innovative fundraising ideas, and genuine concern for our family and especially our teddy bear baby donovan...:)

Please continue to pray for the families on 5200 and trying to keep their sanity while watching their children struggle to grow cells grow and for those that have to make decisions that will change their lives forever...

PLease also pray for friends in Indianapolis that they will maintain their health, and feel the comfort of our prayers during the struggles they face..

Love and Sweet Dreams

Melissa ( believing anything is possible and loving the oscars) Darren ( bored and alseep watching the oscars) Dylan running around like crazy despite the sudafed drowsy version:) Donovan ) a joy, my hero, my life, my love, my baby d #2, and peacefully sleeping and having sweet dreams)

Friday, March 3, 2006 2:06 PM CST

Hello family and friends,

Today we had clinic and just got home. DOnovan did such a great job. What a strong cancer kickin butter...Lol...What a sweetie..He was his usual smiley flirty self...

WE got the results back from his chimersim test...This test determines his donor cell count..

HE IS 98nd more...The test isnt sensitive enough to determine 100 percent but this is great and the best news you could get...YEAH go DOnny go...

Donovans labs however came back very odd... So the NP was a little thrown off...He has been averaging a WBC= 15 or higher and Hemoglobin of 10.4 and PLatelets normal at 150,000. WEll today they came back and his

WBC= 5.6
plates= 88,000
Hgb= 9.2

So that was really unusual for him..SO we retested him and they came up a little bit but were still odd..SO we are waiting to hear back from Dr K to find out what that is all about...WE weaned his steroids and his cyclosporine blood levels are on the lower side of normal so that maybe what has caused the dip...

But who knows... Probably Dr K...But we will wait and see...

Donovan is having a really good session again with his PT and is getting stronger and doing really cool things...He was on his hands and knees for a few minutes or more yesterday...It was so great to see that...Yeah go DOnny...

Thank you to Helen for sending us the great Kickin cancer butt ONesie...He wore it today to Clinic everybody just got such a kick out of it...We took lots of pictures..With someone elses camera of course..But I took some too so I will put those up..

Thank you to Angel LIZ, we got your great package and I am posting those pics too..That was so fun..It also was a great motivator for Donovan to really work hard for his PT...THanks that was perfect timing...

WE are also working with one of Ursulas ( Alexia's Mom the PRincess Warrior) friend for a new fundraiser... Please keep checking back to see if its ready...Our family is getting a little low on funds here so we ask our friends to please help out and this will be a great way and fun way to help...Much thanks in advance having to be here an extra amount of time is going to be a very big struggle for our family. SO thank you all so much for you generosity, love, hope, prayers, and donations...Everybit counts...

PLease continue to pray for our friends far and wide that they will have comfort tonight and feel the prayers from all of us...

love

Melissa ( getting ready to have dinner with another family here) Darren ( ditto ) Dylan ( having great fun with grandpapa watching movies and enjoying unwrapping gifts) Donovan ( having PT and loving his new gifts)

Wednesday, March 1, 2006 8:01 PM CST

Good evening everybody

I sign at over 111 days...Donovan had his heart ultra sound or echo and his pulminary tests for his hundred day studies and all is well there...His heart showed some thickening but I guess it is normal for transplant kids and will reverse in time...

WE find out his donor cell amount friday...Hoepfully its a 100percent... He has been doing pretty well despite all the feeding issues so we arent too concerned that it will come back anything but 100 percent...

WE are trying new techniques with him for feeding and letting him take more in. WE are feeding by gravity and it allows his belly to decide the pressure and quickness of the feed..( I hope that makes sense) ANyways he is doing pretty well.

He loves all the commotion around the house.. Mostly the commotion is Dylan screaming and being crazy... Little monkey...Donovan just stares at him and smiles..Its actually quite cute...

Dr K changed a few things on tuesday and added some drugs and decreased others... Donovan has been flirting with a fever now for a couple days... NOThing too high but high for him...He has been about 99.8 and his normal is usually low around 97.4 so it makes me worried... But he is on an adequate amount of antibiotics for the H pylori so it should cover him... The docs are just watching him....They are also watching his blood pressure..Its been pretty high and he is on a hefty dose of amlodopine... But we are hoping it was temporary from all of the steroids and the stress of surgery...

Its great having the fam back but strange too...Donovan kind of had our own little way of doing things and now its been changed...Its hard to change sometimes...But the extra hands are great and I am truly thankful that my family is here...

Thank you so much Lori for the great care package...Wow what a bunch of goodies...Dylan was sure it was a box for him and sure enough it had a dump truck and books he just loves all of it...EVen all the snacks...Thank you so much...IT means so much to our family..
Thank you to Angels on earth for all of the great cards...ITs been really cool getting cards from all over even England...

Thank you Angel Nickey for the very cute scrapbooking day by day joke...That was so me the past three weeks..LOL... Thanks for keeping my spirits high...

To all of my strong friends fighting on 5200 keep it up you guys and gals...You are all in my prayers and I cant wait to see you in clinic...

With much love

Melissa

Monday, February 27, 2006 7:35 AM CST

Good morning

Well my family made it...Dylan and Darren made it last night... OUr house is now full... However, they brought with them colds.. Great...I sure hope Donovan and I do ok...Last thing we both need is to get sick and then the whole family is sick...

I will update later... The delirium has subsided and "normalcy" ( our normalcy is back )....

love

Melissa