Day 20....

Tuesday, October 9, 2012

Dillon continues to improve.  Overnight his temp was below 101 all night.  The nausea and diarrhea are in full swing, presumably from the total body irradiation.  This is uncomfortable, almost uncontrollable, and will possibly last for several weeks....UGGHHH!!  Dillon has now not eaten for a month (aside from a few bites of watermelon a couple of times).  He is not wasting away....he has the IV nutrition that includes completely balanced nutrition.  Today I asked when we might expect Dillon to begin eating again and the doctor's response was that a lot of kids go home on TPN (IV nutrition) and they get it for 12 hours every night to maintain their weight and they slowly wean off of it as their intake increases and they begin to be able to maintain their weight and hydration through oral intake.

Speaking of weight.....Dillon is back down to his baseline weight, which means that his fluid overload and retention has been corrected.  It is still a delicate balance but he looks much much better; he is not so puffy anymore and he is just barely yellow.  His bilirubin is still 5 today but they say it takes a while for the body to clear that out. 

Okay, so about the counts that we are holding our breath for.....I found this article about BMT and felt that the explanation of the engraftment was perfect for sharing with all of you...so here it is.

Measuring Engraftment

After you receive a bone marrow or cord blood transplant (also called a BMT), your transplant team will watch for signs of engraftment. Engraftment is when the donated cells you received for your transplant start to grow and make new blood cells.
You will have daily blood samples taken while you are waiting for your donated cells to engraft. The blood samples will be given a complete blood count (CBC) test. A CBC test can give your doctors information about the kinds and numbers of healthy cells in the blood. The types of blood cells that are counted to measure engraftment are neutrophils, which are a type of white blood cell that are important for fighting infections, and platelets, which help control bleeding.

Neutrophil engraftment

A CBC test counts the number of neutrophils in your bloodstream. An absolute neutrophil count (ANC) of 500 or more for 3 days in a row is a sign of engraftment. This means that the blood test shows 500 or more neutrophils in a cubic millimeter of blood. Neutrophil engraftment can occur as early as 10 days after transplant. About 20 days is more common for patients who receive marrow or peripheral (circulating) blood cells. For patients who receive cord blood, the average time to neutrophil engraftment is between 21 and 35 days.

Platelet engraftment

A CBC test will also show the number of platelets in your bloodstream. A platelet count of 20,000 to 50,000 is a mark of platelet engraftment. This means your blood test shows 20,000 - 50,000 platelets per microliter of blood. For patients who receive marrow or peripheral blood cells, platelet engraftment often happens at the same time or a little bit after neutrophil engraftment. For patients who receive cord blood, it may be 8 weeks or longer after transplant before platelet engraftment occurs.

Okay, so as you read the magic number is 500 for 3 days.....two days ago Dillon's ANC was 192, yesterday it was 97, and today it is 277!!!  So this is a bit of a roller coaster and tomorrow it could be lower again, but we are definitely trending in the right direction.  Now my posts will include the ANC...so you can watch and wait with me!!

Okay, now a photo.  You know Dillon has been on over 40 medications on any given day....check out this IV pole and the best part, of course, is the new T-shirt!!

There are 9 pumps on this IV pole!!!!

Day 19

Monday, October 8, 2012

Dillon is still improving.  His color is almost back to normal and the swelling/ fluid retention has improved greatly as well.  He has lost almost 7 pounds of fluid over the past week.  At his peek of yellowness (is that a word??) his bilirubin was 15 and now it is 5 with normal being between 0.2 -1.2.   He still as fevers up to 102 routinely.  The source has not been identified yet but aggressive treatment with 3 different antibiotics, an antiviral, and 2 antifungals are supposed to be helping.  His abscess is beginning to heal, his mouth and throat are almost completely better, the fever is a bit more controlled now as it was at 105 for a few days, and his labs show that his body is recovering from the assault on the liver and kidneys.  They have cultured many bodily fluids....you name it, they have tested it....and nothing is growing out any bacteria.  

Tomorrow I will begin discussing the lab values that the doctors watch that show his new immune system/bone marrow is beginning to function.....we are not quite there yet but it is definitely on the horizon.  

Departure Day :(

Monday, October 8, 2012

Sean and Luca left today at about noon.  It is so hard to say "see you next time".....They will be back in 2 weeks.   Most of the visit was spent switching back and forth between being with Dillon and being at the apartment.  There was not a lot of outside recreation this visit.  Luca of course, being ever so wise, completely understood and had no problem just hanging out in brother's room and at Brent's Place.  We did go on a little shopping trip and scored some really nice used hockey skates.  Luca has grown 2 shoe sizes in the past 6 months...so needless to say his old skates don't fit anymore.

Day 17....slow recovery

Saturday, October 6, 2012

Dillon is slowly restoring his body.  Yesterday midday he agreed to order some watermelon (one of the only fresh foods he is allowed to have) and he ate 4 or 5 bites.  That is the first solid food he has eaten in 3 weeks.  He has been and continues to drink a couple of cups of ice water and yesterday he asked for lemonade.  His skin is a little less yellow and his bilirubin count is falling very slowly, which is the trend we have been waiting for.  Every day before yesterday the bilirubin was rising and finally a slight dip.  Dillon is still extremely discolored, he does not really look like himself between the puffiness and the discoloration.  My mom and Luca were a bit shocked when they first saw him.  His kidney function also improved enough for him to get the contrast for the MRI yesterday...so that is also a big improvement, although he has a ways to go.

His legs and hands are beginning to regain more function.  For a few days his fingers just did not seem to work well.  He had trouble grabbing and holding small things, he could not hold a pill to put it into his mouth, but now he can.  His feet were also not functioning quite right (sort of stiff and floppy at the same time) so walking to the bathroom was impossible for the past few days but yesterday he got up (with the assistance of 2 people) and got to the bathroom and even got his much dreaded shower.  He was exhausted after all that action but he had to admit that he did feel better being clean and moisturized.  His skin is terribly dry.

Stable and steady.....on the mend, slowly but surely.

Day 16.....SNOW!!!

Friday, October 5, 2012

I spent the night at the apartment with Luca and my Mom.....look what we woke up to this morning.

First Snow in Denver

First snow in Denver

Day 14.....out of ICU

Wednesday, October 3, 2012

Dillon is stable.  He is out of ICU and back on the BMT unit.  He still has many complex issues...pretty much the same as yesterday.  He has lost a few liters of fluid but his liver, kidneys and many other things are still struggling to correct themselves.

I am out of words......more another day.

Transferred to the ICU....day +13

Tuesday, October 2, 2012

As you all know, the previous few days have been difficult for Dillon with fevers and such.

Well that all came to a head yesterday with him actually losing consciousness, dangerously low blood pressure, fluid overload throughout his body, decreased urine output, yellowing of skin and eyes, an abscess on his backside that is extremely painful and infected......

He is in the ICU.  He is safe and stable, although still in a precarious place at the moment.  The doctors are working very hard to correct the many and complex issues that have come about in the past 24 hours.  This morning at rounds there were 20 professionals involved...many minds working together to share their expertise and get Dillon back on track.

He is terrified, in extreme pain, having trouble breathing and needing oxygen, the list is long....but please know that he is safe right now....not "out of the woods" but he is stable. 

Right now the issues are extreme fluid retention (he has gained over 8 pounds in the past 1-1/2 days) in the setting of low blood pressure and decreased kidney function.  If they just gave him meds to excrete the fluid it would overload his kidneys and they might shut down, and his blood pressure could drop again to dangerously low levels.  The danger of not getting the fluid excreted is risk of pneumonia with fluid building up in his lungs and his heart is working very very hard to pump blood to his body.  His liver is also not quite functioning properly and that is a huge concern in the face of the bone marrow transplant; his bilirubin is very high so his skin and eyes are quite yellow.  His kidney function is not up to what it should be.  His fever continues, although not as high as a few days ago, and they do believe this is because of the huge, terrible, raw, raging abscess on Dillon's butt.  They are concerned that the infection has moved into Dillon's blood and he has sepsis.....

Sorry I am not being more descriptive or explanatory.  I am exhausted and just out of energy.  As things resolve or treatment changes I will let you know.  Sean is here with me.  I called him yesterday evening when Dillon lost consciousness and asked him to get here as soon as possible (he was here by 11 a.m. this morning, it is a 7-hour drive).  One or both of my parents will deliver Luca up here in the next few days (probably Thursday evening).  Sean and Luca had planned on being here this weekend already, so this is just a little alteration in the original plan.

I am so very grateful to have my husband by my side and the way Dillon's eyes lit up when he realized his daddy was in the room was priceless.