Wow! It's been nearly two weeks now since I put my thoughts down. My apologies to those that follow my blog regularly, I'm as anxious to write as you are to read my entries! I need to do a better job carving out some time to do this for myself...
Last few weeks have been fairly uneventful. Jaden has gone to all of Devin's Saturday baseball games. We take the entire clan and it's a good day out for all. It's one of the few times that Jaden can be out amongst people (with his mask, hat and sunblock, of course). I've also taken him and Gia with me to the grocery store and Target. Not very exciting, but an outing nonetheless. I also tested the waters with two play dates. The first one was at my friend's house and even though her son was careful not to run around too much with Jaden, my little guy still was exhausted. After the two hour visit, Jaden asked if he could nap in the car and slept until 7pm. I was so stressed that he was going to get a fever, but he stayed at 98 degrees all night.
The second and most recent, we had friends over to our place. Their two boys and ours ran around from basketball in the backyard, to video games, to Legos and everything in between. Jaden didn't get to bed until 10:30pm and I was sure he would be running a fever. To my surprise, he did wonderfully. No fever, no over-exertion. I think we're turning the corner!
We had clinic last Monday and labs were drawn as usual. We could not do chimerism tests on Jaden because I was told by Nurse Sherrie that Duke had not sent Gia's DNA samples yet. This was surprising to me because the team at Duke is normally so responsive. It took one email from me to Dr. Prasad to get the ball rolling and withing 24 hours Jaden and Gia's DNA samples were at CHO! Seamless--that's Duke for you! I swear I should be in an infomercial for them with Jaden as the poster child. I am still so impressed with that place!
It was a quick visit and we didn't even wait for our lab results. I hoped everything would be fine since his counts had been stable for several weeks. Well, I got a call from Sherrie a day or two ago telling me that Jaden's CMV test had come back positive this time. Of course I was worried. I wondered if I had exposed Jaden to something, but Sherrie assured me that Jaden already carried the CMV virus in his body. The immunosuppression Jaden's been on has allowed this virus to resurface. We will need to go back to clinic this Monday to redraw the labs. If they are positive again, Jaden will be put on a course of Gancyclovir again for several weeks.
My concern was that now that Jaden has a port, how will I administer IV medications? I'm not comfortable accessing/deaccessing the port and I don't want to admit him for something so simple as new medications. Sherrie told me that indeed Jaden would need IV Gancyclovir because the oral form is not as potent. He will receive it twice a day for two weeks and then once a day for another week or so. If the test comes back negative at this point, they may do another week just to be safe. If it is still positive, they will have to switch to another medicine, possibly Foscarnate. Okay, STOP right there. We are NOT going to give him Foscarnate. This was the medication that caused the severe kidney inflammation and excruciating pain--possibly the worst side effect Jaden faced. HELL NO, we're not doing that again! Sherrie said that we'd cross that bridge if we came to it. She didn't want me to worry just yet because the second test could be negative. It has happened before...
Okay, so telling me not to worry isn't really the solution. I have the issue in my mind now and all I do is worry. I worry about logistics. Could I be trained to administer IV meds via his port at home? I had done so many IV meds via his central line back at the apartment in Durham. How much harder could this really be? What if I couldn't do it? Would I need to take him to Oakland (30 min away, without traffic) twice a day to have this done? Or worse, would they admit him? But for two weeks or more? That didn't seem reasonable. More importantly, just as I was thinking of easing my grip on Jaden's activities and allowing him a little more leeway, a new problem has arisen...and so these thoughts circle around and around in my head.
The good thing about going in for labs this Monday is that we can now check Jaden's chimerism again. Last check his lymphocytes were at 34% or so, up from the mid twenties. I pray that they are continuing to go up. I need to see a positive sign that we can wean the immunosuppressants soon, meaning Jaden can start to do a few more things.
On the flip side, we celebrated my little warrior's 7th birthday on the 7th. It was a very low key day, with a cake and just us plus my sister and nephew here. I had planned to have two of his friends over for a mini-celebration a week later but it keeps getting postponed--either due to schedules or someone or the other being sick.
We tried to make the day special for Jaden. Guri got some balloons and we decorated the house. I made a poster for his room. We also got him a few things on his list. Guri and I took him to lunch (what else, McDonalds!) and then my little fashionista actually wanted to go shopping! He is one of the few boys I know that actually enjoys picking out his clothes and has a very definitive style. So, he went to the mall and picked out some very cool tee-shirts and shorts. The boy is stylin'!
Jaden has been complaining once again of being bored. He watches TV and plays video games most of the day. When Devin comes home from school, Jaden will turn off the TV long enough to sit down at the table and do his Kumon, just like big brother. Then it's off to the backyard for basketball and baseball. Devin has been really good about understanding that Jaden needs play time and does his best to spend some time with his little bro. Of course, there are still the usual brawls and fist fights on occasion, but that's nothing new. They know mom will punish them both, so they're actually starting to work things out on their own ;-) I've also spent some time with Jaden playing basketball in the backyard. I'm pretty good if you ask me, but Mr. Jaden feels there is much that needs improvement!
Yesterday, I took Jaden to a movie theater to see Furry Vengeance. The movie was nothing to write home about (even Jaden complained it was boring throughout). The beauty was being in an actual movie theater--out of the house. Jaden couldn't have the popcorn or the sodas, because they were sitting out and from a fountain, but I did let him indulge in the biggest box of Nerds candy you have ever seen. I also snuck in a can of soda from home so he could have a drink. It was just good to be out of the house and doing something different. I picked the perfect time--2:20pm. The kids weren't out of school yet and we had the theater all to ourselves, except for one other set of boys. It was ideal as far as outings go. I did Purrell his hands as soon as we got back to the car and had him wash them when we got home.
The boys both want to see the animated movie How To Train Your Dragon in 3D. I have to check with the theater to find a slow time to take them. I offered to take them separately, but they want to go together. Luckily it has been out for a few weeks already, so I'm hoping the buzz is slowing down. Once again, I'll have to deal with Devin's request for popcorn and soda, knowing Jaden cannot join him. It's been a delicate balance...
Another challenge will be Devin's upcoming birthday. We don't want to restrict him because he's been through a lot this year as well and it just wouldn't be fair to deprive him of a celebration. However, we need to figure out how we will include his brother when Devin's choice of activities is a laser tag place-somewhere Jaden is not allowed to go.
There's also a great play in the city (San Francisco) that I wanted to take them to. Peter Pan is playing in a rotunda style theater. What fun it would have been for everyone, but again, Jaden will not be able to go. I'll have to do a special day with Devin and Guri will need to find something he and Jaden can do together. As disappointing as it is, I have to remind myself we've come a long way. I just keep telling myself that hopefully by this time next year, Jaden will be over this hurdle as well and our lives will be hopefully getting back to the way they were with both boys on the baseball field, surrounded by friends, having a blast as only boys can.
It's only another year, but it seems like an eternity...
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