Several people have recently brought it to my attention that I've been slacking on the blog again, lol... I apologize. Life gets in the way and I find myself hopelessly caught up in it. Plus, it doesn't help when I cheat on the blog by posting quick updates on Facebook... I wish the two (Facebook & Typepad) would interact in such a way that I could make some of my posts on FB automatically post on the blog as well...
A lot has happened since my last post. A LOT. First of all, Ryan's engraftment analysis results came back early, and the results were truly outstanding: his engraftment was 99.9%!!! NO signs of leukemia! That was such an immense relief for Jason and I. I cried when I found out. It was extremely CATHARTIC. We could go on with our lives because our little boy is fine. ...He ended up staying in the hospital for a total of 12 days this time, due to the staph infection in his blood. When he came home, he didn't skip a beat on being a happy, energetic little boy... The day he was discharged, I was actually at home with the girls, and when Jason and Ryan pulled up in our truck, it was sheer excitement for all of us! Ryan got out of the truck and ran up & hugged each one of us. It was a great day!!
Unfortunately, I had to devote my attention the rest of that week to prepping for a pending court date... This is the "same issue" that I have been dealing with since last year, just after Ryan relapsed. I did attend court last year, but it had to be continued and I managed to get it postponed until this April due to Ryan's extended illness and treatment... Then Ryan was unexpectedly hospitalized again in early April. It's not like I have ANY control over this aspect of our life. I asked the respondent's attorney for another continuance, but not surprisingly, he was completely vile & insensitive about my situation with Ryan and refused. So I had to do my best to prep for court (since I am representing myself), and show up the Friday after Ryan was released from the hospital. I stayed up the entire night before court to put the finishing touches on all my materials & exhibits. In court, the judge kindly granted a continuance despite the objection from the respondent's attorney. Thank goodness for the sane, rational, compassionate and ethical people in this world!! We return to court on July 1st, and I feel well prepared, thanks to all the work I had to do that week. I am grateful for being able to accomplish so much, but have to admit that I am still slightly bitter about all the time with my family that I was robbed of that week.
It took me a day and a half to finally feel caught up enough on sleep and then I embarked on prepping for Ryan's 6th birthday. We had discussed having a Lego party sometime in March and he was really looking forward to it. I could not disappoint, despite the time crunch. Despite screwing up on the invitations by not sending them out in a more timely manner, and by embarrassingly & mistakingly not sending some of them out at all, we still managed to have a Lego party on April 30th. It was a GREAT day!!! Ryan was sooooo excited!! He kept asking us all week if it was his birthday yet, and on the 30th, the 6 year old boy who usually sleeps in until 10 am or even 11 am on a regular basis woke up at 6:30 am, asking if it was his birthday!!! LOL!!! He is so ridiculously adorable!!!!!!!!
He was pretty happy most of the day (just a few minor meltdowns). We want to thank our cousin, Carolina, for the amazing food that she made, and our other cousins, Mari, Suzie & Cori, for transporting it. We also want to thank everyone that showed up and made his day extra special. Special thanks to RoRo, also, for helping us to prep and do damage control on our yard, which had been taken over by the four furry beasts that live with us. They pretty much destroyed much of the grass, dug holes, and slept on our patio furniture the previous months, while we were busy nursing Ryan back to health. RoRo came over several days in a row and worked really hard to help restore & beautify our yard. Rochelle, the girls, Jason and I all pitched in with sweat equity, but I have to admit that they did a lot more work on the yard than I did. I focused more on getting the inside of the house ready, in addition to procuring the necessary items for the party. Special thanks to the Talbert Foundation, as well, for generously helping Rochelle & our family to do this, in an effort to not only make the yard look presentable for Ry's party, but more importantly, to get rid of the dirt patches and areas that potentially harbor harmful bacteria that could infect Ryan. In the very near future, we will also be creating more shade for him, in order to better protect him now that he is super sensitive to sunlight. One of Rochelle's business partners will also be releveling the yard out and placing new sod out there, so that Ryan has clean, even grass to play on. Getting everything ready for Ryan's birthday party and creating a healthy, clean, safe haven for him has been a group effort. Jasmine and Teresa have been helping a lot, too.
...Here are some pics from Ryan's 6th birthday:
It was a super special day indeed!!!!! So incredibly packed with emotion and meaning to see him looking so healthy and happy as we celebrated his 6th year of life. You can see all of the pictures here on Flickr.
Since then, we've been busy with other family get-togethers and getting back into the swing of things with school and speech therapy, after missing nearly a month due to his hospitalization and subsequent Spring break. His teacher, Maryl, and I, were both very delighted and relieved to find out that he retained a LOT!! I did pack his sight words and alpha friends and took them to the hospital with us, where he had his tutor, Mary, come by everyday, and she worked with him on specific stuff he has been working on with Maryl.
Jason was also a bit sick (I think it was stress related with everything that happened last month), first with a severe eye infection, and then with a cough & cold. Thankfully, he was finally able to rest and get rid of both. Unfortunately, we had to miss some important events, like a friend's retirement party, and also what would have been Ryan's first annual Bone Marrow Transplant Reunion at City of Hope. We were stretched too thin with everything happening at once. I hope we can make it to next year's reunion, and even more importantly, I hope we can meet Ryan's donor at next year's event, if not sooner than that!
Last Thursday, Ryan had his regularly scheduled doctors appointment. All went well up until the point where we started reviewing the results from his labs. He appears to be doing GREAT, and he looks WONDERFUL, but there was a huge change in his values since his appointment two weeks prior... His platelet count dropped from a high of 258 to 141, and his white blood cell count also dropped from the 5000 range, to the 3000 range. Just before we saw those results, we had started discussing the possibility of removing Ryan's Hickman catether in time for him to be able to swim this summer... When, Dr. Pawlowska saw the change in his results, her reaction was something like, "Wow, what is happening here???" F U C K !!!!! That was pretty much mine and Jason's reaction. We didn't say it out loud, but I know we were both thinking it as our hearts dropped and the butterflies started up again in a most agonizing manner. We then reviewed his values from 4 weeks prior, and realized that his platelet count was around 150-something, and his white blood count was lower than the 5000 range, and hypothesized that the peak values of 250-something and 5000-something might be due to the fact that he had a blood transfusion when he was in the hospital. He might just be going back to a more "typical" range now... Plus, there is also the possibility that these fluctuations might be due to the fact that he has been fighting something since Thursday, and now has a cough... Who freakin' knows???!!! Anyhow, Dr. Pawlowska tried to shrug it off after her initial surprise, by telling us to try to "not worry" over the weekend. I have been trying very, very hard, but it has insiduously crept back into my mind repeatedly. I have struggled to keep it muffled and under control. We have been there too many times, in that place where everything seems fine, and we're told not to worry because everything's okay... I want to be somewhat "rational" and think and be confident that he is okay, especially since he just had such positive engraftment analysis results so recently, but the fact of the matter is that cancer SUCKS so bad, and even when it's gone, or seems to be gone, it is still able to infuse your life with terror and uncertainty at a moment's notice. Dr. Pawlowska asked us to bring him back on Monday (today) for additional lab work/further analysis. Initially, she was going to have us bring him back in a week instead of two weeks, but promptly changed her mind and decided that Monday would be better so that too much time doesn't pass before we get a handle on the situation and clarify what's going on.
So we're hoping for some reallllllly, reallllly, realllllly SUPER GOOD results by the late afternoon!!!! Jason has to work, so I will be taking Ryan to COH. Once I find out what's going on, I PROMISE to post an update here, and not just on FB. PROMISE.
I want to end this post on a positive note by saying that despite the news from last Thursday, we had an overall very nice and relatively relaxing Mother's Day. It was definitely punctuated by random stressful thoughts that I should not have to deal with on Mother's Day, but Jason and the kids went out of their way to spoil me a bit more than usual. Jason made us all a lovely breakfast, and Ryan ran around and made us all laugh. He had a long, white shoelace this morning and he kept asserting that it was his tail. Finally, with one end of the shoelace secured to his underwear, he kept running around like a maniac, saying, "Look at my tail! Look at my tail!!" and laughing up a storm. He made me smile and laugh so much today! ...Unfortunately, Nick could not be with us today because he had to work, but he did call me before heading into work. Jason also brought home some nice flowers, and Ryan carefully handed them to me in a vase. We set them on a stool, right next to the BEAUTIFUL pot of flowers that Ryan hand-painted and planted for me on Friday, during homeschool with Maryl. All the flowers are sooo, sooo incredibly lovely & cheery to look at, and they make me smile, feel happy and loved, simultaneously.
We spent the day relaxing and also running errands to prepare for an upcoming research expedition that I'll be embarking on soon with several other grad students from my university. It was a nice, decadently lazy and self-indulgent Mother's Day and I enjoyed feeling a bit spoiled rotten! Thank you to my awesome husband and the kids. ♥ I hope you all enjoyed Mother's Day as well!!
Thanks for stopping by... I promise to post an update later this afternoon, or in the early evening.
