A Pretty Good Night

Donavynn slept well last night.  I had to wake him up every few hours to go to the bathroom.  Which was a nice switch.  Most of the time he wakes me up every hour or so.  He seems to still be feeling tired this morning but hopefully he'll perk up soon.  We are going to have some fun today doing some school work and playing with his lego's etc.  He doesn't want breakfast this morning but doesn't seem to have too bad of an upset stomach.  We'll see how the day goes and maybe he'll want to eat something later.  Abbey and her sister came to visit last night and we had a wonderful pajama party - music, dancing and all.  Donavynn seemed to really enjoy himself and I know that we did!  That is what I think tired him out and why he slept so well.  That's about all for now.  I'll post again later when we get his first methotrexate level back.  

Methotrexate Stay AGAIN

We got here at about 9:30 this morning and we actually got to our room by 10:30. Donavynn has eaten pretty good today, which is probably the most he'll eat while we are here. The Methotrexate seems to make him feel very nauseated. So far things are going good. We have been playing with his lego's, and even got in a nap. His "girlfriend" Abbey will be coming to visit some time tonight w/ her little sister, and Donavynn is really looking forward to that. They started his chemo at 4 and it has to run for 24 hours, once it is done they will check his levels and we'll see how far we have to come before we can go home. As I have mentioned before in his blog he has to be at 0.1 or less before we can be discharged b/c the Methotrexate is nephrotoxic.

Donavynn's Birthday

                                               Donavynn and Tim


                                                  My Mr. Strong!




                                                      The party has arrived!

We were very sad that Donavynn was going to have to be in the hospital on his birthday, but thanks to much prayer he did so much better than anyone expected.  The doc's said that only about 1% of kids w/ a gram negative infection come to the hospital looking and acting like Donavynn and recover so fast.  That was good to hear.  He didn't act sick, his only symptom at the time of admit was a fever.  So anyway, Donavynn and I woke up around 8 o'clock and to our surprise Daddy (Dave) was already there, bearing gifts! lol  So we proceeded to let Donavynn open up all his presents.  As soon as we finished the doctor came in to tell us how his ANC was back up, and he was happy w/ how Donavynn was doing so he would talk to Dr. Shore about going home soon.  After that I headed out to the store to get Donavynn the goldfish he had asked for the night before and after learning that they didn't have any nearly had a melt down.  When I got back child life had already been in to decorate his room and deliver his cake.  They had told Dave that the party would be at 11:30.  Just before the party began he received his Erwinia.  At 11:30 child life showed up, one person w/ a guitar and a few nurses and the birthday singing began!  Next, much to our surprise came more presents from the hospital and then the cake.  Donavynn was so happy.  He told me last night that he had a great birthday.  And that was all that mattered to us.  After that Tim and Ann showed up with more presents, and Donavynn was so happy to see his buddy!  While he was there they started his Rocephin and after that we just had to wait for Alterna-care to arrive with his antibiotics to take home.  So I have to give him 6 days of IV antibiotics at home.  We go back to clinic tomorrow for his last Erwinia shot of this cycle, then Thursday he has an LP. Other than that we are just hoping that things go smoothly for awhile now.  As you can see by the photos, Donavynn is holding on to his hair still.  We are surprised considering the HD Ara-C took it all last time in 2 weeks, but time will tell, he has many more infusions of that over the next 6 months.  

Quick Update

I will post a more in depth update tomorrow but I wanted to let everyone know that we are home - 7 days IV antibiotics at home and that plus his ANC going from 20 to 1540 overnight were by far his best birthday presents.  His birthday, in spite of being in the hospital was great and we plan on celebrating for at least the rest of the weekend! Pics to come soon, but we are all exhausted, it has been a long week.  Thank you for all of the prayers!!!

Update

Sorry I haven't posted before now, there hasn't been really any news from the docs and I wanted to post after I heard what organism it is.  According to the lab report it is E. Coli, which is what I was thinking, that is pretty common.  The upside is he is doing FANTASTIC!  Ativan apparently has the opposite affect on him as he was up literally ALL night playing on his DS.  But he has eaten a little today, and is unhooked from the IV b/c he is drinking as well.  He has been up out of bed playing and enjoying himself and has been fever free since 10 last night.  I even got him to take a bath yesterday after he got his blood, which was a good sign.  They are going to give him his Erwinia tomorrow instead, which sucks b/c tomorrow is his birthday.  Lets hope he doesn't have any problems w/ it.  Then he will get the next shot on Sunday so they are expecting us to at least be here until then I'm guessing.  Typical treatment for this is 14 days after the first negative culture (if last nights stays negative then we got that) but they will let us do his IV antibiotics at home, however we will have to be here for awhile regardless.  But at least he is feeling good.  They are going to have a cake for him tomorrow and his Daddy and a friend of his will be coming to visit.  I'll post pics when I get a chance.  Donavynn wants me to play with him for awhile so I'll update again later.  Please keep praying that his culture stays negative, if they can't get a negative one after 48 hrs of treatment they will have to replace his port.  :( Oh and BTW his platelets went up on their own.  His counts look like they are SLOWLY starting to recover.  

Fuck you cancer!!!

More than 3 years ago we heard 4 words that we never expected... "Your child has cancer".  In those three years I have seen cancer take so much away from my son and our entire family.  We have taken it in stride and kept our head high, always w/ a positive outlook.  Even after his relapse last September.  I always tell myself that Donavynn doesn't know the difference so this is all harder on us than it is on him.  But as we sit in the hospital 2 days away from his 5th birthday after being told he has an infection w/ gram negative rods, I find myself angry and heartbroken that cancer is now going to take away the fun of his 5th birthday as if it hasn't take enough already!  In more than three years cancer has taken away his hair, his appetite, his freedom to play in the sun for very long b/c the chemo makes him super sensitive to the sun and he's allergic to all types of sun screen, countless playdates, countless nights that should have been spent snuggled up in his own bed, countless tears from needles sticks, dressing removals, LP's, BMB's, and surgeries,  the opportunity to start kindergarten on time, the ability to just go shopping w/ his mommy, or go out to dinner to celebrate, 1 halloween,  his freedom to roughhouse at different times b/c his platelets are low, his energy when his counts are low, and so much more.  And that is just what it has taken from him, that doesn't count all that it has taken away from all who love him.  I am thankful that we caught this early, the doctors are happy w/ how he is looking and acting.  But it surely explains why the GCSF hasn't been working.  Monday he had been on it for 3 days and he is usually completely recovered in 3 days, but this time his ANC was 20, w/ no signs of pending count recovery, which made me nervous.  Now we know that it wasn't boosting his counts b/c everything being produced was being used to fight this infection.  They just drew another CBC b/c his hemoglobin was 8.1 last night, so we are pretty sure he'll be getting a unit of blood today as well.  I will try to keep you updated as things progress, please pray that he will continue to stay strong and will be feeling much better by Friday so that at least he can enjoy his birthday, even if we do have to spend it here in the hospital.

This past week

Our stay in the hospital was a couple days longer than we had expected b/c of fevers and the nausea that came w/ it.  But we have been home now for 1 week.  He started the Erwinia while in the hospital and had another shot of it yesterday.  They also drew counts b/c he had been on GCSF for 3 days.  Much to our surprise it hasn't worked yet.  Usually 3 days is all he needs, but not this time.  Yesterday his ANC was 20!  And his platelets were 10, so as you can guess he got a transfusion of platelets yesterday.  When we got home his shirt was covered in blood.  Apparently the platelets hadn't had time to work yet and when the de-accessed his port he continued to bleed.  Scared the life out of me, but a little pressure and he was fine.  We got back up for another shot tomorrow and then again on Friday (his 5th birthday) so I'm hoping that his counts will show signs of recovery tomorrow and that he won't need anymore blood products.  But considering his hemoglobin was 9, I won't be surprised if he needs blood.  I hate to see that this is what we have to look forward to for the next 6 months or so depending on delays in treatment.  Shockingly none of this seems to be affecting him.  He is happy and bouncy, a little more tired than usual but otherwise good.  Which is nice to see.  We took a bike ride yesterday once we got his port to stop bleeding.  He was a little upset that I wouldn't let him ride his new 2 wheeler but I explained to him that the big wheel was safer w/ his platelets being low.  Though he got a transfusion I am not sure how much they helped so I'd rather be safe than sorry.  He understood and was happy that I was letting him go.  The way I look at is is that he should be able to live as normal a life as possible if we take simple precautions like helmets and elbow and knee pads on a big wheel! lol  His counts will keep him out of the public so I don't want him to lose playtime outside.  He knows his limits which helps alot.  He understands what it means when platelets and counts are low so there isn't an argument if he can't do something.  I guess that is pretty much all for now.  Life has been good, difficult at time for my little man w/ his nightly injections of GCSF etc but we are all doing well and holding it together.  I'll try to post again after clinic tomorrow.