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Dear everyone,
The ups and downs continue. First the most current update on Travis. On Thursday evening, we were allowed to return home on "pass" for the weekend. Joe and I were ecstatic, as we felt certain that on Monday (or shortly thereafter) we'd then be given the word that we could go home "for good". After packing up for the few days (no small task) and driving home, the boys arrived feeling quite tired at home. Travis was pretty upset at being home and having his welcome home begin with taking a pile of medications. He was saying "I want to go back". It was pretty unsettling, but we chalked it up to his overtired state.
Originally, we all thought he would get a prescription and we'd be back at the RMH. Finally, Travis was admitted to the hospital, however. Poor thing was peeing tiny bits every 5 minutes, which meant a trip to the bathroom, wash hands, get to the bed, and back to the bathroom again ? over and over again. And each trip meant discomfort. So, after more tests today, including a bladder ultrasound (Travis now calls it a Jelly Belly), they've determined he has a blood clot in his bladder. I don't think they're too alarmed at this point ? as hopefully, with the extra hydration (IV), it will dissolve and be passed out of his body. This could take several days to a week, and during this time he'll be on pain medication, so we're once again guests of the Hotel Children's ? and becoming enemies with the incessant beeping pumps once again.
A few more highlights of our frenzied 24 hours. As I was preparing our home nursing pump to get Travis' IV meds started (we'd not been admitted yet, but were using a room on the HOT unit) I gave the boys something to eat (it was now about 7:30 pm). As I begin troubleshooting the pump which turns out was broken, I look over to Spencer, who began choking on a huge hunk of cheese he'd piled in his mouth. I made it just in time to catch about half of the cheese he hawked up ? the rest of the stuff landed on the floor and chair, to my horror. He was fine. The sterile room we were borrowing now had our mark on it. I knew then that we were destined to stay the night in the hospital ? in that room. Our penance, perhaps?
Travis and I greeted each other every 30 minutes throughout the entire night as I raced my bed upon his soft, confused call "Mom, I have to pee." By morning I would have done ANYTHING just to have uninterrupted sleep. But I awoke hearing Travis telling his nurse he was in pain, and that he needed medication. I heard the nurse reply "Hmmm we just gave you morphine an hour ago, Travis". I sat bolt awake and called out "He's allergic to morphine!!!" We immediately turned on the light and checked for the swollen lips (always our first clue with him), and he was fine. Fortunately, the dose given was so small, nothing happened.
Great way to start the day. The other temporary shake-up was later in the morning, as the nurse was trying to flush Travis' central line, and found it was clogged. Probably not a huge worry, except for Travis' other line clogged up for good about 2 weeks ago, so we're down to one lumen for all his IV meds and hydration. We held our breath for about 45 minutes, as they squirted in (barely) Eurocynase (sp?), and that cleared the line ? WHEW! We are worried, though, as our doctor thinks the line is acting up now, and we may be in for problems and have to do something about it soon ? maybe a new line ? BUMMER. Also, Travis' counts vary considerably even when tested on blood draws moments apart. Dr. C thinks this is because of his "funky" line, too. We're praying it holds out for awhile, as he needs IV access for quite some time yet.
The day was a bit schizophrenic for me, as I was dealing with Travis' issues in the morning (including his increasing resistance and rebellion to taking his meds). Then Joe and the boys spent the afternoon at the hospital playing computer games, watching TV and playing Nintendo (they were in heaven) while I worked from my "office", the phone room at the Ronald McDonald House. Quite stressful, but in fact turned out to be a stimulating afternoon for me ? was actually energizing to be jumping back in "full force" with my clients. I will be back full time in January, and am close to that now. It's a huge challenge, but one that Joe and I have agreed is important to do (Joe has been a full-time stay-at-home Dad with the kids for the last 2 years. We traded, after I did so for a few years after the kids were born. So I've been the family breadwinner since then.) But, hopefully this is just one more bump in the road that will quickly pass. I'm still hopeful we will be home soon. Not only will it be wonderful for our family, but also I can work without some of the logistical challenges presented while up here.
But if you'll bear with me, here's the beautiful part of this update ? and a memory Joe and I will share forever. On Friday night, we sat down to Shabbat (Sabbath) dinner and the boys said the prayers over the candles, wine and bread. We then named all the people we knew who are in need of healing (including a friend who donated marrow that day, another who would be soon, all the kids we know who have cancer, and some other friends whom we know are dealing with health issues) and then sang a prayer for them. It was a nice dinner, as we then discussed what good deeds we would do as a family each day of Hanukah, instead of having presents each night (the boys have received so many the last few months). We prepared a list (Travis was scribe) that will be our guide next week. Then, afterwards, Travis said "Mom, can I go out on the balcony?" It was cool and pitch dark outside ? just stars were out, and I said, "Sure honey. But why?". He said, "I just want to say a prayer to God." Joe and I froze, looking at each other. This boy constantly amazes us. We asked if he wanted to be alone or if he wanted us with him. It was the latter, so Joe, Spencer and I held hands behind Travis. There he was, shivering outside on the deck in the darkness, looking up to the sky, as he quietly, seriously said, "Thank you God for making this wonderful world, for my wonderful family and for making me fine." Again, Joe and I could barely breathe, we were so touched. Spencer had plans of his own, which were to make his own special prayer, which he then requested. He quietly took his spot alone in front of us, and said "Thank you God, for making me in this family and for our beautiful world." Joe and I each then took our turns, expressing our thanks for such incredible children and for each other. This is one of those magical family moments we will never forget ? cancer or no cancer.
So, the ups and downs continue. So does the stress but we're still trying hard to keep our heads above water. It's the boys that will inspire us to pull through. We are truly blessed.
More soon,
Love,
Melanie