[straightouttacompton]

update: hospital visit, day 7

We are still here at COH. Ryan will be here until Saturday evening or Sunday morning. They are being extra cautious with him. His doctor also felt it was best since I just had my ankle surgery last Thursday, and with Ryan in the hospital, a lot of stuff is done by the nurses and hospital staff (like giving him medication, prepping meals, etc). Another good thing about him being here is that his neuropsychologist has been able to work closely with him and also directly observe him during schooltime. 

So today Ryan needed a blood transfusion (it's still being transfused as I type). This is the first blood transfusion he has needed since his transplant. His hemoglobin value is a little low, at 8.1, and because of the infection, his doctor doesn't want him running on a low tank of fuel, per se. She thinks that his hemoglobin dropped because of the blood infection. She said that it's not uncommon for that to happen. However, she also ordered an engraftment analysis to see what his engraftment looks like, in order to make sure that everything is okay. Code words for making sure that he is not relapsing.

So here we are again, on the roller coaster ride. Kinda sucks because I thought we were D O N E with blood transfusions and "other stuff." Pediatric cancer is the "gift" that keeps on giving. A lifetime of worry, no matter how positive your outlook on life is. Again, these feelings of worry are highly amplified after relapse and transplant. "Thinking positive" is easier said than done. I think I'm doing a good job, but would like to politely ask for no written or verbal reminders about thinking positively, because I know that's what I should be doing, but again, it's so much easier said than done. Most likely, and hopefully, yes, his hemoglobin is low due to the blood infection, but again, this is the gift that keeps on giving because forevermore, we will worry anytime anything is out of sync. I hate living in a suspended state of not really knowing what is really going on, but my hands are tied. I guess I just have to keep relearning this lesson about living in the moment until I get it down pat.

His doctor said that she put a "rush order" on the engraftment analysis, but it will still take around a week for the results to come back. Without the rush, it would be more like two weeks. She said that we will most likely be discharged and back home by the time that we have the results.  

Today, his neuropsychologist observed him during school. He's been having MAJOR tantrums (I'm talking serious Damien Omen II style) over school, even worse than the ones he sometimes has at home, and so the nueropsychologist (Dr. Jeanelle) is now involved with trying to help us out with behavior modification techniques. We know he is just really pissed about being in the hospital again, but a lot of his anger is directed towards not wanting to do school. So, today, Dr. Jeanelle observed him and after his school session she said that she thinks that a lot of the resistance is due to his inability to focus and/or poor impluse control. That may or may not be due to all the chemotherapy he's had. It IS a side effect of chemotherapy, particularly in little kids who are treated with it before the age of 5. She also thinks that his inability to focus doesn't allow them to be able to adequately gauge what he is capable of doing because she thinks he is quite capable, but the struggle is over being able to focus and maintain his focus. His teacher is now using a chart everyday, and he's able to earn five stickers during his school session. It has definitely helped a bit. Today, he behaved really quite well during school, but I think it was because Dr. Jeanelle was there in the room and he really admires her a lot and wanted to show off for her. lol... We'll see how school works out tomorrow without Dr. Jeanelle in the room with him. 

After school, we went for a quick walk down to the Bistro (he wanted peanuts and pop tarts and I needed some coffee!), and then he had a short group session with the play therapist, Toni. We also had a chance to briefly see his buddy, Sophie, and her mom. She is also an inpatient right now, but they aren't able to play together because she is still in isolation. :(

Following play therapy, we were in the room relaxing when he started acting up and being surly again. His favorite thing to do right now when he's really pissed off at me because I'm not doing exactly what he wants is to tell me in his scariest voice (which makes me actually struggle to not laugh or smile and simultaneously strangle him, lol), "MOMMY! I TOLD YOU TO ____________ RIGHT NOW!!! Do it right NOW or I am going to spank your butt! ONE! TWO! THREE!!!" and then he actually tries hitting me! So I've been taking away his toys, his blankets and pillows and leaving him alone in the room until he calms down (I can observe him through the window), so he's not really alone. Yesterday he also earned some spankings, which were not particularly effective. I find that taking things away and leaving the room works best, because when I stay in the room and ignore him, it makes him more angry and he starts yelling even louder. So that's what we've been dealing with this past week with him in the hospital. I know he really doesn't want to be here, but it is what it is and he has to learn better coping skills and to behave whether he is sick or not. 

I left the room earlier this evening during one of his fits, and he promptly stopped shouting and fell asleep. When I stepped out of the room, the nurses were smiling in disbelief over his shouting and asked me if he was okay. I think that the Benadryl they gave him prior to his transfusion made him really tired and cranky. He's been asleep for a while, and right now I'm enjoying the quiet, but something tells me that this is the calm before the storm because he's not going to want to go to bed until after midnight now. 

Well, that's it for today's update. I'll try to take some pics of him to post tomorrow. I want to thank my Aunt Debbie for coming by last night, Ro, Steph, Summer, Leigh and the kids for stopping by the other day after the Camp Ronald McDonald Walk for Kids, and would like also thank Hester for the nice visit this morning (it was soooo nice to finally see you now that you're back!). 

Thanks for stopping by.

sorry to hear you're out of snorts!

[The view of the San Gabriels from Ryan's hospital room this afternoon.]

Just as my orthopedic surgeon promised, I was able to drive today without any issues and so the girls and I drove to COH to hang out with Ryan and Jason. We also took them fresh clothes as well as some books & toys to keep Ryan busy. It was great seeing a lot of the night nurses, who became like family last year after we practically lived at COH most of fall. Our Aunt Debbie also stopped by for a quick visit and to bring some goodies for Ryan and us (thank you Debbie, & Bernardo, too, for all the yummy treats!). 

We are not sure if Ryan will be spending a total of 7 or 10 days in the hospital... I saw one of his doctors today as I walked onto the peds floor, and she chatted a bit with me about his status.  He definitely had a staph infection in his blood, and it was most likely related to his Hickman Catheter; however, they don't want to remove the Hickman just yet, because he's still a little guy. They are waiting a little longer while he's in the hospital to see if any of the bacteria grows again. If it does, then they will remove the Hickman without question, but if the strong intravenous antibiotics that he is receiving daily clear up the infection, they will leave the Hickman in for a few more months. She also said that when he was admitted, she wasn't sure what was going on in terms of infection because overall, he looked great, especially once the fever was gone; however, in retrospect, now that they know he had a staph infection in his blood, she said that there were small signs that he was headed towards septic shock: low blood pressure, lack of appetite, etc... We both agreed that we were glad that they decided to error on the side of caution and admit him for observation and antibiotics from the start.

She would like to have him stay the entire 10 days for i.v. antibiotics and observation, but his regular doctor told Jason earlier in the afternoon that Ryan might be able to go home in 7 days if they discharge him with an i.v. pack so that we could administer the antibiotics at home for the entire 10 days. We'll just have to be patient and wait to see what they decide. We're confident that they'll make a decision based on his best interest. 

I want to add that Jason reported that Ryan was completely NUTS today. He described his behavior as "obscene" when I called to check on them earlier in the day. Apparently, Ryan was going stir crazy and pushing all of Jason's buttons. He behaved so poorly when his hospital tutor came by that they had to have her leave. He was going nuts, kicking and hitting Jason and screaming. He was really upset about being back at the hospital. They sent one of the peds neuropsychologists over to meet with them and to help calm Ryan down. ...By the time we got there in the afternoon (with dinner from Pepes), he was in much better spirits. Jason is at his wits end being confined with a maniac for three days in such a small room. The plan is for me to relieve him of his duties tomorrow. We will be crossing our fingers that the healing incision site on my leg will not greatly impact my ability to care for him for a few days.

I'll leave you with more pictures from today...

[Hamming it up, happy with his cheery balloons (Thank You, Topanga Family!! ♥) and a cookie from downstairs.]

  

[More ham & cheese: 1. Admiring his own reflection in the mylar balloon. 2. Giving the thumbs up to our Topanga Family.]

[With one of his best buds/doctors... Dr. Anderson stopped by for a visit. It was so nice to catch up with him. He was Ryan's primary doctor before transplant. He's an amazing/brilliant doc/person and a big kid at heart.]

[Someone was excited to receive his new netbook after accidentally sending his old one sailing out of his hands, across the air, and onto the floor where the screen crashed into many, many tiny pieces. Yes, that's Bruce 16, the shark with tubies, keeping him company.]

[He was so excited that he was hogging up both computers, something he tries to accuse me of doing, but the proof is in the pictures.   ;)  ]

[The ridiculously cute card from our Top Fam.]

[Capping off a fun night by watching Despicable Me.]

As always, thanks for stopping by...

3 day stay upgraded to a 10 day stay

Ryan is doing better, his fever is gone, and he looks great; however, the results from his lab cultures came back and indicated that he has a staph infection in his blood. This means that he'll have to stay at COH for approximately 10 days for treatment to completely eradicate it. Needless to say, he is definitely not happy about being an in-patient.

He refuses to eat the cafeteria food, too, because he connects it psychologically with how nauseous and awful he felt post transplant. Yesterday I ordered him a corndog, thinking that he'd eat that, however, when it arrived, he sniffed it and waved it away. He used to sniff his food a lot after the hard chemo he received last year and also after his transplant. He hasn't done that in a long time and eats pretty much everything at home. Thank goodness for the bistro downstairs! (and thank you, Topanga Family for the Sodexo cards, they are gonna will definitely be put to good use feeding Ryan because he WILL eat food from the Bistro, lol)

We aren't sure how or why he got the blood infection, but one of the nurses told Jason today that sometimes that's a  Hickman catheter's way of saying it's time for it to be removed. Ryan has had his Hickman catheter in place since early November, just before he had his transplant. Usually, the Hickman is removed approximately 100 days following transplant, but we decided along with Ryan's doctor to leave his catheter in place until just before summer. The main reason is because he is still a little guy and removing the catheter means that he will have to have his vein accessed by a needle every time he goes to COH for follow-up appointments and blood work. Until very recently, that meant every week. We were going to have it removed in time for summer so he could go swimming. It looks like it might be removed sooner. We should have more information about this after tomorrow. 

In the meantime, I'm at home, recovering from my ankle surgery which took place this morning. It was a relatively simple procedure despite having to be placed under i.v. anesthesia. I did have to leave the out-patient surgery center on crutches, though. I couldn't walk unassisted, and probably won't be able to for another day or two. I graduated to using just one crutch late this evening.

My doctor said I should be able to drive by tomorrow, and so I will be driving to COH to take more clean clothes to Jason & Ryan, and probably more toys to keep Ryan busy now that he'll be there a little longer than expected. I probably won't spend the night there until Saturday, so that my foot will have a chance to heal a bit more. I also want to make sure that my cold is gone. I am feeling a lot better this evening in terms of my cold. The ear infection symptoms seem to be gone for the most part. Funny how the body adjusts on it's own sometimes.

Well, I'm pretty tired, so I'm gonna hit the sack. I will update again tomorrow. 

unexpected visit & three day stay at coh for ryan

Sorry for not posting a whole lot lately. I'm still trying to regain my footing after St. Baldrick's and a slew of other activities and events that happened in a huge cluster during the month of March. March and April are always just extremely busy for us.

Ryan has been doing really well, but the past few days he has seemed to be fighting a cold or something. He had green discharge from his nose a few days ago, and then I started getting a sore throat and mini cold the next day, too. I don't know if its from allergies because of the wind/change in weather/seasonal stuff, or something that I caught from Ryan. We both have been home, and haven't had much contact with the "outside world of germs" lately. He has been playing outside quite a bit with our neighbors, though. Who knows, it's a total toss up between something contagious and allergy overload.

In any case, early this morning, around 4 am, Ryan woke up complaining of throat pain and nausea. I took his temperature and it was hovering somewhere between 101 and 103 deg F. I couldn't get an accurate reading despite having a new temporal scanner. I figured it was closer to 101 or 102 at the most, because he was chatting with me and didn't seem hot enough to have a fever of 103. I called the pediatrician on call at City of Hope knowing that they were going to ask us to bring him in. Anytime he has a fever that's over 101, he will have to automatically go in.

So the phone call was made, orders were given to take him in. I woke up Jason and he decided that he should take Ryan and I should stay home because I'm also sick, and I'm supposed to have surgery on my leg tomorrow to remove the last remaining screw from my ankle. 

Jason took him in, they drew blood for labs and decided to admit Ryan as an in-patient for observation, antibiotics and fluids because of the fever. This morning, when one of his doctors was doing rounds she decided it would be best to keep him there for three days as an in-patient. She wants to be overly cautious with him because of his weakened immune system. She wants him to stay until they get the results back from his blood cultures, to make sure that he doesn't have any infection(s) or other issues. His blood pressure is also running low (which is has been, sporadically, since his transplant), and so they want to keep an eye on that as well.

Jason reports that Ryan is in good spirits except for the fact that he's a little perturbed about having to stay at the hospital for a few days. He wants to come home already. He's DONE with hospital stays.

I want to add that hospital stays like this, following transplant, are VERY common, and we have been extremely fortunate thus far, because this is Ryan's FIRST in-patient hospitalization since he was discharged post-transplant in December. I belong to an online community of parents of children with relapsed ALL, and most of the children who have had a bone marrow transplant are usually in and out of the hospital following initial post-transplant hospitalization for fevers, infections and other complications. When Ryan was an in-patient last year, I also saw other COH families with post-transplant kids who were in & out of the hospital following transplant, too, so I feel that we have been extraordinarily lucky. My gut feeling is that this is just a cold/sore throat, possibly even strep at the worst, but even then, this is a relatively minor complication (knocking on wood!).

Anyhow, I didn't get to sleep until 7 am this morning and woke up around noon. I am going to get ready to go to the hospital to relieve Jason for a bit. He will be there with Ryan for most of the three days because of my foot surgery tomorrow. Jason and I discussed the possibility of postponing my surgery, but decided that it would be best for me to just go forward with it anyways. Our friend, Rochelle, has offered to help with the logistics of getting me to and from the hospital tomorrow and baby-sitting me, so to speak, since the surgery will be under anesthesia. It's a relatively minor surgery, and I'm looking forward to life without anymore annoying hardware in my leg, especially that ridiculous screw which has been irritating the crap out of my ankle tissues and causing me to still limp when I'm tired, despite it being nearly two years since the original fractures.

Anyhow, looks like a fairly busy next few days, but we'll get through it. It's nothing compared to last year. NOTHING! Piece of cake compared to that. 

Not sure what is going to happen with the Camp Ronald McDonald Walk for Kids on Sunday now, in terms of our participation. We were looking forward to participating and I kept saying that nothing will keep me away from attending, even if I had to just sit on a bench somewhere (because of my surgery), but I wasn't anticipating a hospitalization for Ryan. It doesn't look like we'll be able to make it this year. That's totally disappointing, but considering the circumstances we don't really have an option. If you'd still like to help, though, please click here to go to our Walk for Kids page. It is greatly appreciated because Camp holds an extra special place in our hearts for all that they do for so many pediatric cancer families like ours. ...Oftentimes, friends and family ask if there's anything they can do to help and that truly is a great way to help our family, because Camp is such an integral part of our healing process, and if you support Camp, it benefits our family directly, as well as benefitting hundreds of other pediatric cancer families. 

I will keep you all updated with Ryan's progress. Thanks for stopping by.

link to photos for 2011 lafd/lapd st. baldrick's foundation event

I finally had a chance to upload the pictures from our annual LAFD/LAPD St. Baldrick's event to Flickr. You can see them by clicking on this link. Enjoy! ♥