Sully's Archived News

(February 2008)

Feb 6 - Feb 15, 2008

Hey, everyone!  Sorry it has taken us so long to get the updates started!  We have been very busy with our  “big man”!!  This will be a long update because so much has happened and is continuing to happen!

First of all, we have finally made it to transplant!  Wow, it is hard to believe!  After having to delay it twice we are finally here!!  The last time we had to delay transplant was because his leukemic cells went from 4.7% to 93%.  Talk about a huge shock!!  So, his wonderful doctors decided to try a new chemo that they use on patients who relapse.  This chemo is called chloferabine (spelling?).  It has been the only chemo that made him feel really sick!  However, it was worth it!  Sully’s leukemic cells went down to 10.3%!  What a blessing!  So, his wonderful doctors decided to go ahead to transplant!  Sully was admitted on February 5 (the same night as the tornadoes).  He started the chemo to prepare his marrow for the transplant on February 6, which in transplant is day -9.  One of the chemos Sully was given, called thiotepa, can cause 2^nd degree burns because it comes out the pores of their skin.  So, we had to wear gloves whenever we touched him and he had to have a bath and a dressing change of his hickman line every 4 hours for basically two days.  Plus, he had to have his clothes and his bedding changed every 4 hours.  Talk about a couple of crazy days!  Yesterday, day-1, Sully received his last chemo called melphelane(spelling?)!  This chemo destroys all the bone marrow!  How crazy is that?  As long as the transplant takes and Sully has no relapse, he is done with chemo!!!!  It was a big day!

Today, day 0, was the big transplant day!  I can’t believe it!!  He received his daddy’s stem cells at 11:00 a.m.  Everything went great!  We had 4 nurses in here, Dr. Scott (Sully’s wonderful doctor he has had from day one!), and the lady who brought up the cells.  Jason’s cells were still frozen and when his nurse said she was ready, they defrosted the stem cells.  They then had one nurse push the stem cells through his line 2ml at a time.  It took maybe one or two minutes and it was done!  Sully did awesome!  However, Sully does STINK!  They told us that he would smell after receiving the cells!  Some say it smells like garbage, some like cream corn, and others say it smells like tomato juice and still others, garlic!  I think he smells like tomato juice.  How lovely!!  Now, all Sully has left is receiving his daddy’s natural killer cells.  Jason will be donating them on Thursday and Sully will be receiving them on Friday, day +7.  Hopefully, he will show signs of ingrafting, this will mean the transplant is taking and his bone marrow is rebuilding.  Approximately 3 weeks after he receives the natural killer cells, Sully will have a BMA.  This test will show us whether he has any leukemia cells in his bone marrow.  So, we are asking for you to continue praying!  Pray that Sully will have a result of no leukemia cells!  Pray, also, Sully will stay well during this whole process!  If he were to get sick right now, it could be detrimental!  Please pray hard for our “little man” and for all the other children stricken with cancer!  Thanks and we love you all!

Jason has had to go to get some lab work drawn but just as soon as he returns, he will add his experiences from the 'night shift' to this update!  :).....

...Well, it took me a little longer than I wanted to write (seeing as I've been back from having my lab work drawn for a day) but here goes...  First off, I think that I can say authoritatively that his breath smelled like a sickeningly sweet and rotting cream-style corn concoction.  Yesterday, the game that kept Sully laughing was him getting nose to nose with me as I held him and he would push my head back and wait for me to drop it back down to where our noses touched again.  I think that my sudden 'reappearance' kept surprising him and that's what had him laughing.  Anywho, he gave me ample opportunity to scrutinize his aroma and I'm sticking to gawd awful devil corn.  Well, while we were playing, Sully had this burp followed by a big sigh; it was a one, two combination that had me dry heaving and I think it buckled my knees just a little too.  :)  Last night, Sullivan was a little uncomfortable and was not content to lay in the crib.  He would nod off every time that I held him but when I put him down he would wake up in a matter of minutes and let me know that what he really wanted was to cuddle bug.  I finally gave in at about 4:30 or 5:00 and sat in the vinyl recliner with him for the rest of his sleep.  Well, my buddy's breath hadn't improved.  He wormed his way just under my chin and found that to be the best place to get his rest.  I needed a snorkel.  I would tilt my head back or turn to the side to catch a little fresh air but nothing lasted.  I even tried to retaliate with a little gas of my own (seriously, it was self defense) but nothing could penetrate the smog.  In the end, I think it was his exhaust that eventually put me to sleep again.  When we both woke up this morning, I had a slight hangover and his scent had gotten much more tolerable...  :)

Aside from that adventure, I believe that Tabitha has pretty well covered his stay for transplant so far except for the one night of sleepless bliss I got to have when Sully received his Thiotepa.  The baths and dressing changes didn't end when he went to sleep for the night.  We had to wake the poor guy up every 4 hours to clean him up so that the chemo drug would not damage his skin (I believe that I was told it can cause burns).  Between the constant (and necessary) collection of his vitals, his bathing and dressing changes, and trying to settle him back down after bathing, he was constantly interrupted and I don't think that either of us got more than 2 - 2 1/2 hours of sleep that night.  Amazingly, my little hero was able to function better than I could the next day.  That's enough for today, I'm headed back to the hospital now to relieve Tab for the evening.

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Feb 16 - Feb 17, 2008

The 16th was a pretty easy day.  Jason, of course, stayed at the hospital last night and I didn't get to the hospital until 1pm today.  I had a lot of cleaning to do at the house.  

Sully has had a good day.  He has been his smiling, playful self.  His Manna and Paw came to see him and he enjoyed that very much!  Not much has gone on today.  It has been very quiet and that is a good thing!  Now we are waiting for Daddy to get here for the night.  Daddy sure is a trooper!  I don't know how he is able to function each day.  Gotta love him!

...Hannah and I had us a big time while Mommy and Sully kicked it at the hospital Saturday.  We donned on boots and play clothes (although some of the clothes Hannah picked turned out to be brand new school clothes I'd just bought her-- Yep, I pay attention--) and we dragged Moe to the park.  He got let off the leash when we got into the park area and Hannah and I headed to the pond/lake thing with our nets to see what critters we could catch.  While we were at the bank, Hannah fell face first into the water soaking and muddying her 'play clothes' but we made out like bandits by catching 5 little fish that were close enough to the water's edge to get into nets.  She and I had to hit the shower and put our clothes into the wash immediately to keep them from staining and to keep us from tracking up the whole house with mud and crud.  Anywho, we got to the hospital at around 10:00; just in time to cuddle bug with my man.  Mommy called to let me know she'd arrived home with Hannah about a half hour later... and to let me know that I hadn't put the clothes we'd played in (and stained) into the wash like my mind told me to.  We're sorry Mommy.  :-(  Sully and I popped in a CD of his 'Big Paw-Paw's' music and we basically sang and danced ourselves to sleep.

On Sunday, Tab's Mom and Dad came to relieve her early afternoon and she came out to the Wolf Chase area to meet Hannah and me for lunch.  Hannah and I were busy running and hiding from aliens... no, not undocumented illegal workers; the three-eyed slimy outer space kind.  We parked in front of the Circuit City and after I got my tech gadget fix, she told me that we were being pursued and that we must run, quickly, across the parking lot to get away.  So, we ran... and we ran... and we ran... then we walked a little and threw rocks into some water (it's ok, these aliens are scared of water) ... and then we ran some more.  We ran across the parking lot, behind Home Depot and Toys 'R' Us, we ran across the street between Chili's and Toys 'R' Us, across the grass lot in front of Chili's and Pier 1, across the front of Best Buy and took shelter for a minute inside of the sporting goods store.  I told Hannah that they had anti-alien guns on the roof and that any aliens that came after us in there got turned into the smooshed gum we saw on the sidewalk... but I really just wanted to see the air-soft guns.  They only had a couple so my reprieve from running was short.  Our trek next took us along the side of the sports store and back behind the Toys 'R' Us and Home Depot where we got cornered.  It was looking bad until Mommy called and she said she was ready to eat.  We explained our dire circumstances and she drove behind the buildings to get us and saved us from certain doom.  We ate at Abbay's.  They were out of chicken nuggets.  There is another sporting good's store behind it and they have the mother of all 'off the shelf' air-soft guns I've found... the Kirenex.  It's 380 fps of fully automatic airgun bliss.  I know, I'd probably just shoot my eyes out but there's no way that 'Black Bart' or his bandits could hide from the firestorm of plastic fury this peacemaker could shell out.  Well, soon after the sports store we finished up our little family shopping trip and Mommy headed back to the hospital to have some more Sully time.  Hannah and I headed home where my PC blew up as I was gearing up to post this weekend's updates.  So, it's a day late.  :)  

My mother got up to the hospital around 6:30, I think, to relieve Tabitha and to hold the fort until I got showered and presentable for my nightly date with my little dude.  He napped for my Mom for a while last night but thankfully, he was awake and ready for me when I got there.  We just have to sing and cut-up for a little while each night before we go to sleep; he really enjoys the swinging and dipping we do while we dance, tethered, to his IV pole.  This just occurred to me but I think that would make me and Sully a couple of 'pole dancers'...  :)  

Next week is also a big week for Sullivan.  He'll be receiving the NK cells Friday that I donate on Thursday.  We were told that he might feel kind of crummy after getting them for a while so please pray that his ickyness is short-lived and not severe.  Please also pray for and send happy thoughts to the other sick children that come here to be treated as well as for the minds and decisions of the wonderful caregivers here who dedicate themselves every day to giving these sick children long, happy and healthy lives.

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Feb 18 - Feb 20, 2008

Well, on the 18th, day +3, Hannah had off from school for President's day.  So, my dad came to relieve me at the hospital so that Hannah and I could spend the day together.  That little stinker just wanted to stay at home and play by herself.  So, I got some much needed laundry done and actually got to rest a little bit.  Hannah and I did venture out to go to McCalister's deli for lunch (one of her favorite places to eat!).  While Hannah and I were at home, my dad was at the hospital taking care of the "bub man".  Sully received platelets (this was the first time in about two weeks) and they gave him a new medicine called IVIG (i.e. Immune Globulin).  IVIG is a medicine used to help the body fight infection.  Since Sully has no immunity right now, they wanted to give him something to help fight off any "yuckies".  Plus, Sully is still on an antibiotic regiment to help him fight off any bacterial infections.  Jason of course stayed the night with Sully.  I believe the nights are getting better for the both of them.  Sully is sleeping better in the crib!!  This is a good thing since the doctors told us the crib was the healthiest place for him to be during and after the transplant!  Whatever is best for our MAN!  

Yesterday (19th), day +4, was a good day for Sully and I.  Not much happened!  We were able to play, sleep, eat, bathe, play, sleep, eat, etc....  Sully's ANC was 100 (this has to do with his immunity), so we thought he maybe engrafting (rebuilding bone marrow) already.  However, today it was back down to 0, which we figured he couldn't be engrafting this soon.  The doctors believe he will begin to engraft in the next few days!  How exciting and scary!  On a different note, please pray for my mom and her family, her father died last night from a long battle with ahlzeimers (spelling?).  Especially pray for my gmaw, Maxine Sampson, during this time.

Today (20th), day +5, has also been a good and easy day.  I got here and Jason was sound asleep on the couch (very unusual).  Apparently they had an excellent night last night!  Pray they have many more nights like these.  Not much is happening.  We are just waiting for Friday, the big Natural Killer Cells day!  Jason will be donating his NK cells tomorrow.  He will have to sit in the donor room for 4 to 6 hours with his arms tied to the arm rests, while the cells are "pumped" out of his arms!!  This will be a very long day for Jason!  Then on Friday Sully will receive his daddy's NK cells!  Hopefully this will bring Sully one day closer to a healthy life!  After Friday, it will be time to just wait!!  The next few weeks will be long because we will be sitting on pins and needles wondering if the transplant is working!  Please pray Jason's cells are "taking over"!  We know that with God all things are possible!

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Feb 21 - Feb 22, 2008

Hey, everyone!  Yesterday, day +6, was a very easy day!  Nothing happened, except Jason had to sit in the donor room 5 hours with his arms tied to the chair!!  They were "pumping" out his natural killer cells.  I went down to check on Jason while Sully was asleep and he was watching his Firefly series and was all wrapped up in a blanket.  All he asked from me was to get him a coke and hold it for him so that he could get a few sips.  I wish I would have gotten a picture of how it was done!  Oh, well.  Sully had a very good day!  He was all smiles as usual!!

Today, day +7, was a pretty crazy day!  Jason's boss let him take the day off since Sully was going to receive the NK cells today (plus we had no idea when he was going to receive them).  Sully did not have a very good night last night.  Jason said he woke up about every 15 minutes!  Therefore, daddy didn't get any sleep either.  Then this morning Sully ran a fever of 100.8.  So, he was given some tylenol and then some morphine because he seemed uncomfortable.  After the meds, he was playful and smiley again!  The fever never returned either!!  Plus, Sully got his first bump and bruise on his forehead!  Sully was playing in his crib and he fell to the side and hit his head on the side of the crib (mind you we had a pillow against the side to stop this very thing, but somehow he missed it).  This caused a bump and bruise to appear immediately!  The reason why he was bruising so easily was because he needed platelets.  So, today he received blood and platelets!  Plus, he also got his Natural Killer cells!  They did not start transplanting them until 6:51pm and they finished at 6:53pm.  The NK cells transplant is done just like the stem cell transplant, from a syringe into his hickman line.  This was the last step of the transplant process!!!  WOW!  It is hard to believe we are at this point!  Now we just sit and wait, talk about nerve racking!!  However, Dr. Scott came in and told us that they saw one Medamylacite (spelling?).  Are you wonder what in the world a Medamylacite is?  Well, it is an immature white blood cell!  This could mean he is already starting to engraph!  YEAH!  So, again please pray the transplant works and our "bubby man" will be healed!   Keep PRAYING!!

...Very easy day, she says.  Nothing happened, eh?  Try and tell that to my arms!  :)  The vampires had their way with me again yesterday; I'm not sure how they get out during daytime hours but believe me, they do.  Seriously, though, I did get a slight poke in both arms yesterday and had what I'm told was two total body volumes of my blood cycled through the machine over a five hour period and filtered for my white blood cells.  Tab's right though, I do have a TV series called Firefly on DVD that I took the opportunity to watch because I brought them up here to see but Sullivan's room is missing a remote... all I can get is the first video on each of the discs to play so I took them down to the dungeon and they agreed to let me see the videos that I miss upstairs on each disc once the bloodletting commenced (now everything makes A LOT more sense!  :) ).  Here's the thing; my personal vampire put a hex on me before sticking me...  All he said was, "Now be sure to get any scratching done now that you need to get done because you won't be able to for a while." (I know, it sounds innocent enough) but I am convinced that saying that was AT LEAST as effective as having a bucket of ants poured down your shorts.  Everything just starts to itch; I had places I didn't even know I had (and probably will never find again) start itching!  

Next came the 'lab work'.  My lab work was drawn from my right arm, which is also the arm that they used to return my blood after filtering out the cells they required and I can see why.  While we were drawing the labs my vein did this thing that felt to me exactly like when you get to the bottom of your milkshake and you take that last big pull from the straw and you get that loud sssllurrppp that lets you and everyone around know there is just nothing left.  Well, you couldn't hear it but you could watch the line they were drawing from vibrate every time they 'slurped'.  Definitely not natural!!  The next while was actually just dull pain in both arms as the machine did it's work pumping out of one arm and back into the other.  Firefly was an excellent distraction and my two coke sips from Tabitha pulled me through.  Really the most uncomfortable part of the whole process was bending and using my arms again after I was unhooked.  I felt like the Tin Man for about an hour as I worked the stiffness out.  While everything I've said about the itching and the pain and the slurping is true, I have also got to say that from my personal experiences, Dracula and his kind have gotten a bad rap.  I was always well tended to and really couldn't have gotten better service even if my caregiver hadn't been intent on draining my blood.  :-)

Today, the little man got what looked like 11 or 12 CCs of NK (Natural Killer) cells.  It lasted just about as long as the first transplant from last Friday, ~ 2 minutes.  But joy of  joys, Sully's breath doesn't smell like he was marinated in rotting corn tonight (We take our victories wherever we can find them around here)!!!  Ok, so I have been bothered about something lately that one of the doctors cleared up for me today.  (I believe it was Dr. Inaba; if I am recalling incorrectly, I apologize)  What has been eating at me is they put my cells through these filtration processes in order to remove the T-Cells which would tend to cause Graft-Versus-Host-Disease (GVHD), if I understand everything correctly but the thing that has kept me up at night (besides Sully) was 'When my stem cells start to engraft, what is going to keep them from making T-Cells that would just cause the same problems later for Sully?'  What he explained to me is really nothing short of miraculous in how our bodies heal and fight off infections.  The T-Cells will be created and will be 'genetically' the same as mine but T-Cells are the white blood cells with memory and they actually are hatched or created untrained and they get schooled, in effect, in the host's body in the thymus so while they still technically are mine, they truly ARE Sully's as the memory of self and of foreign stuff will not carry over from me to him but will be dictated to them by him; in other words, they get new 'memories', and all his.  I just think that's really cool!  I also got props from the doctor for thinking of that and that's pretty cool too.  

Well, while Sully is asleep, I guess I should have a try at getting some myself.  Please keep praying for and the happy thoughts coming to Sullivan.  It helps us and him more than you'll ever know.  Also keep in your minds and hearts the many other sick kids that come here and the wonderful doctors and caregivers that tend to them.

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Feb 23 - 25

  Well, I guess Jason has a lot to say also!!!  He sure does like to keep you guys reading (ha, ha)!  The weekend was a good one.  Saturday I got up and began to clean the house.  Since Sully isn't home right now the house goes to pot during the week.  When I got to the hospital Sully seemed to be feeling pretty good, except for running a low grade fever.  He has been running a fever since Friday.  They have told us the fever is a normal side effect of engraftment.  He is officially engrafting now!  Today, Feb 25th, is day +10.  Sully's ANC is 100 and his WBC (whit blood cells) count is 300!  We are so blessed that Sully so far is mainly just running a fever with this whole process.  However, Sully did wake up dry heaving this morning and when I tried to give him his Septra medicine he  began to throw up.  So, they gave him some Benadryl and Sully went right off to dream land!  He just woke up and he seems to be feeling much better!  I will try to give another update this evening if I get a chance!  PLEASE keep PRAYING for our "man"!

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Feb 28, 2008

(Day +13)

Sorry it has been 3 days since I have updated!  Sully has felt better, but he still gives us plenty of smiles!  He still is running a fever some and his nausea has gotten somewhat worse.  Plus, he is not wanting to sit up for any length of time (however, he will jump in his Johnny Jump-Up).  The doctor's all say it is due to the engraftment going on in his little body!  However, we have some great news to share!  Sully had a blood test done on Monday and today we got the results!!  Dr. Scott told us that his blood is only showing Jason's cells so far!!!!!!!!!!!!!!!  Praise the Lord!  I know you can all see me just beaming right now!  Plus, his WBC count is up to 3900 and his ANC is up to 815!!  Sully's platelets are also going up on there own!  From what I understand, this all shows that Sully's new bone marrow is "working hard" to be healthy!!  Please  continue praying that Sully's counts will continue to go up!  Now for the big day coming up.  Sully will be having his first BMA on Friday, March 7th, this is one week from tomorrow!!  We need  you to pray that the results will be no leukemia!!  PLEASE  continue to pray!!!  We still have a long ways to go!

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