Things Are Looking Up

Sorry for the delay in posting. Cris was released from the hospital August 29, and then we spent a few weeks at the Ronald McDonald House. We finally made it home by the middle of September!! Since he's been out, things have been kind of hectic. The first few weeks, he was taking so many medications, I had to use a spreadsheet to organize them. He has been on a high calorie, low microbial diet since August, which means that he has a ton of food restrictions. While we were staying at the Ronald McDonald house I actually had a hard time food shopping for him. The Upper East Side is very health conscious, so trying to find items that were not low fat/diet was a huge challenge.

He is doing really well now. His counts have started to recover on their own and he hasn't had to use recovery drugs since early September. If he continues this upward trend, he will be able to come off of his restrictions by the end of October and he will finally be able to eat whatever he wants (apples), go wherever he wants (the movie theater), and do what he wants to do (roller skating). It will make it easier to reach his daily calorie requirements when he is eating what he really wants to eat. In the month that he has been home, he has gained back 3 of the 10 pounds he lost during the transplant process. I don't know how he hasn't lost weight since he seems to have more energy than ever. He wakes up bright and early and never wants to go to sleep. I, on the other hand, am exhausted. Once he is able to go out and play with his cousins, I think (hope) he'll burn off some of his extra energy. I can't complain too much because when he is bouncing off the walls, I know he is feeling great. When he is tired and wants to lay down, I know there's a problem.

Things are slowly getting better. Thanks again for all of your love and support.

xoxo
Adina

P.S.- those of you who texted, emailed, messaged and called me and are still waiting for a response, I am very sorry it is taking me so long. It isn't personal, I just listened to voice mails from JUNE. I'm hoping to respond to all of you very soon.

In, Out and In Again

Yesterday was a very interesting day. The morning was pretty exciting as Cris had been "acoustic" (no med lines/ "tubies") since the day before. The second they deaccessed him, he took off like a rocket and decided to climb on a chair.( I think I am up to my 53,982nd heart attack of the month.) He couldn't get out of the hospital fast enough.

 He got to spend a grand total of 7 hours at the Ronald McDonald house before he spiked a fever and we had to rush back to the hospital. You haven't lived until you have run down the street, carrying your 60 pound child, trying to catch a cab at 11 pm. The cab driver thought I wanted to go into Harlem because, apparently Memorial Hospital sounds like Harlem. The cab ride ended with me screaming directions at him (we were only 5 blocks away, but he didn't know where to go) and throwing money into the front seat when we arrived. We spent almost 6 hours in the ER while they waited for his blood pressure to stabilize. At 4:40, we were finally able to go upstairs. By the time I finally fell asleep, it was almost 6 am. I got an amazing 2 hours of sleep last night. If you have ever spent time in a hospital you know that it is the worst place to get any rest. They wake you up every hour to check your vitals, administer meds, stop the pump from beeping, etc ... Cris slept through pretty much everything, so that was good. Come to think of it, he usually sleeps through everything. Oh well, I'll sleep when we go home. I'd rather have him sleep through the night, he needs the rest more than I do.

When Cris finally woke up, he started coughing and sneezing. He coughed so hard that he threw up. They gave him Tylenol to bring down his temp. They ran antibiotics through each of his 3 lines, one at at time over the course of several hours, to determine whether they could continue using the lines. They also took cultures of each of his 3 lines and nasal swabs. We won't have the results until Monday.

They think it could be one of two things:
1. His central line could be infected and may have to be removed. **I asked why they didn't just remove the line since, technically, his counts have recovered and it was only being left in place in case of an emergency.  If the line was infected and it was removed, the probled would be solved. The Doctor said that I had a good point, but they didn't want to do anything until the test results come back.**
OR
2. He could have a viral infection. He is being treated with antibiotcs until the cultures come back. If it is viral, the antibiotics will be discontinued and he will only be on a saline hydration drip.

The good news is that they gave him Tylenol at 1 pm, and the fever didn't return until 10. The fever wasn't very high, so I'm thinking that's a good thing. When a child with cancer has a fever, it's a huge deal. With any other child, you can give them some Tylenol and they'll get better in a few days. When a child with cancer has a fever, it's an automatic trip to the ER, where they have to test for every possibility under the sun. The worst part is that our local ER is ill-equipped to deal with Cris and so we have to drive down to Memorial every single time he gets sick. Even when he had been off treatment for several months, we ended up driving into the city at midnight because he was sick. Cancer sucks.

Happy Birthday

Cris had an amazing birthday party on Friday! Alyson from child life brought him an ice cream cake, made him a Darth Vader birthday poster and bought him some really cool gifts. He had a great day!

Dr. Trippett stopped by Friday evening and said that the transplant team was really impressed by his progress and that he might be ready to come home as early as this week!!!!!!  They discontinued the G-CSF (a drug which stimulates cell production) and, while his counts initially dropped, they were also beginning to recover on their own. This is a great sign! His body is doing what it is supposed to and is producing the cells it needs to help him fight infection. He looks great and he has started eating again, so they were also able to discontinue the nutrition drip he was on (that thing used to beep all night long). Today they discontinued one of his antibiotics and they lowered the dose of his pain meds. They are supposed to be either eliminating his meds or switching them to pills to prepare him for going home!! We're on our way out!!!!!!!

I don't know if I mentioned this, but the team told me that Cris will be able to return to school at the end of October/beginning of November. We're planning a back to school Star Wars party for the big day...

Adina

Things Are Starting To Suck Less

Typing with gloves is hard. So is trying to use a touch screen phone while wearing the aforementioned gloves. Sleeping with an isolation gown and mask isn't too much fun either.  Just putting that out there.

We have some good news today...they ruled out infection and are now treating him for Engraftment Syndrome. This is common in Autologous Transplant patients despite the fact that they are receiving their own cells. Apparently it is a good thing because it shows that his immune system is beginning to recover (by reacting to these new cells). They started him on steroids (fun, fun, fun) and quickly realized that they had to lower the dose after he cursed out the Physical Therapist. I'm not going to lie, I was pretty amused by the episode. He called her a "Stupid freaking idiot" and told her to shut up because she was annoying him. I wonder where he got that from???? This chick turned to me, with the most priceless look on her face, and tried to explain that this was one of the side effects of the steroids. No Shit. This is his second time at bat. He took steroids for a few months last year, I've seen how the steroids affect him. I live with him. I have been his primary caregiver since he was first diagnosed over a year ago. Homegirl just met him last week and she was forcing him to do something he very clearly didn't want to do. I would have been pissed, too. Anyway, the steroids are working and his fever broke, his blood pressure is back to normal, and the rash is fading.Tomorrow they are inserting a new central line so that he won't have to worry about the IV's in his arms.  Hopefully we can get out of  the Observation Unit before his birthday on Friday.

Things are looking better =)
Adina

Things That Suck

***I am apologizing in advance for any errors in spelling, grammar, punctuation, etc. It has been a rough week and I can't be bothered***
I'll start with the good news: Cristian's counts are improving, which means that the transplant was successful and his body is starting to recover. As of today, he is no longer  neutropenic (when his body is most susceptible to infection).  (Neutrophils are a type of blood cell whose function is to fight infection).

The not so great news is that over the weekend he developed what they think was an infection in his central (medicine) line. He had a fever and his pressure dropped so they had to remove his medication line and insert two peripheral (temporary) IV lines in his arm. They also moved him out of the inpatient unit into the Pediatric Observation Unit where they can monitor him 24 hours a day. Tomorrow they are most likely going to install a new Central line. This will be his 10th surgical procedure in less than 2 years. This evening, he had to have an emergency CT scan to rule out sinus, chest and lung infections. While he was in the machine, the tech was amazed that he was so comfortable in the CT scanner. He couldn't believe that Cris didn't move once, until I told him that this was his 30th scan (give or take). If the scans rule out sinus, chest and lung infections, then the fever, blood pressure, and rash, are most likely due to the engrafting of the cells and they will put him on steroids. A quick note about steroids; they make him super hyper (more hyper than normal) and MOODY. Last year when he was on steroids I had to curse a chick out for making a comment about his behavior. It was bad. Anyway, if the symptoms are due to cell engraftment, the steroids should resolve the symptoms immediately.

In other news;
The hospital has a washer/dryer in the inpatient unit. Last week I watched as two grown women got into a fight over the washing machine. They started screaming and cursing and the next thing I knew one of the women got pushed by the other woman's husband. You would think that both of these ladies would have more important things to worry about...

Adina

Second Birthday (aka Transplant Day)

The transplant is done!!! This morning, Cris had to have a blood transfusion before the transplant since his hemoglobin levels were really low (it's a side effect of the chemo and radiation). Before they do a blood or platelet transfusion, they give him tylenol and benadryl. Any other child would have fallen asleep because of the benadryl, but not Cris. He had another dose of tylenol and benadryl right before the transplant and I thought that he would become drowsy with the second dose of benadryl, but not Cris. The doctors and nurse all said that they have never seen a child go through 8 days of radiation and high dose chemo and have this much energy on transplant day. They couldn't believe that he continued to talk and play throughout the procedure, something they all agreed was extraordinary. Hopefully, his recovery will be equally exceptional and he will be able to come home before September. So far, so great!

Adina

Radiation is OVER!!!

To our great relief, Cris finished radiation this afternoon. Asking Cris to stand completely still for 16 minutes is like asking a river to stop flowing-- not going to happen--ever. He squished, squirmed, wiggled, danced, sang and did pretty much everything except to stand still during treatment. While we were waiting for patient escort to bring us back to the room, an older man walked by wearing a hospital gown, and nothing else. I don't know if he was aware of the show he was putting on...

Being here hasn't been as difficult as I had imagined. Yesterday, Cris played walkie-talkie BINGO. He had a ball playing with the walkie talkie, I'm just not sure how much fun the announcer had. Oh well.
A few minutes ago the candy cart left the room. They loaded him up with about 4 lbs of sugar and chocolate. It's the only food he's eaten in 2 days. He wouldn't drink the milkshake I ordered for him for breakfast, but he has no problem inhaling fruit snacks and sour patch kids. He asked if he could have a bag of Skittles for me and I think he just ate those, too. My kid just ate candy for dinner and I'm happy because he ate something and (hopefully) won't lose too much weight today.

Tomorrow we get to sleep in because chemo doesn't start until 9-10 and he does it in the room. He's used to the chemo so, hopefully it won't be too bad.

~Adina