Saturday, November 7, 2009
Day +44 ("Boring is good ...")
Hunter's clinic visit yesterday was uneventful. He had his routine blood draw and IVIG infusion. Before being admitted we had enrolled Hunter in a nasal wash study, potentially giving us early insight to any viral infections he might have. The study entails swabs of his nostrils and throat. Thankfully, it is much less invasive than the "saline squirt up the nose and suction it out method" performed at the hospital. I believe it's safe to say Hunter prefers the swabs as he was relieved it was over quickly. His ANC and platelet counts held steady, which is good. Hopefully, we will see increases in both next week. Hunter has a routine chest x-ray this Monday, outpatient clinic Tuesday and Friday, and an occupational therapy assessment on Thursday. He still takes a plethora of oral medicines but we're happy the doctors tapered some of the amounts and frequencies. The doctors also decreased Hunter's nightly hydration. He now has 250 milliliters of fluid running over four hours instead of 700 over ten. This change allows us all to get more sleep, which we certainly appreciate. The Physician's Assistant's words of advice during this appointment, "Boring is good!" We've never been so thrilled to be bored!
Thursday, November 5, 2009
Day +42 (Wet, wet, wet ...)
Today has been very slow. We didn't have any appointments and it's been raining steadily since morning. I suppose that isn't a real surprise since we are in Seattle, but we Angelinos are definitely out of our element (no pun intended). The three of us were going stir crazy in our apartment and had to improvise a plan for the day. We wanted Hunter to get some exercise since he doesn't begin physical therapy for another week and a half. The Ronald McDonald House we are living in has two levels. We decided to do laps up and down the hallways and allow Hunter to take the stairs between floors. He started out extremely well, but lost steam after a couple rotations. However, the boy is absolutely tenacious and wanted to continue on his own. We let him push himself for a little while, figuring he had two spotters on the stairs. Anyway, we were happy to get Hunter out of our apartment in some capacity two different times today. Subsequently, he had a great nap and is still thirsty from working out. He is close to reaching his fluid intake goal for the second consecutive day. Hunter's weekly IVIG appointment is tomorrow so we'll be inside in the morning. Hopefully, it will clear up by tomorrow afternoon allowing us to get outside for a wagon ride and some fresh Seattle air.
P.S. We had the pleasure of two friends visiting yesterday, one old and one new. We enjoyed them spending time with us.
P.S. We had the pleasure of two friends visiting yesterday, one old and one new. We enjoyed them spending time with us.
Tuesday, November 3, 2009
Day +40 (A lull ...)
Hunter's first full week out of the hospital has been slow compared to what we have been used to the past seven weeks. Today he had his third outpatient clinic visit. I heard Hunter referred to as "Mr. Personality" while we were waiting for our appointment, which made me laugh out loud. He certainly is excited to be free of his hospital room and is as talkative as ever. Hunter understands English and French, but has spoken predominately English until recently. Now he says hello and goodbye, counts, exclaims, excuses himself and asks several questions in French, while referring to women and men as Madame and Monsieur.
We learned from Hunter's Nutritionist that he is exceeding his calorie intake goal, including protein and calcium goals. He is also very close to meeting his fluid intake goal, but will remain on nightly IV hydration. The team will reassess his need for this at Friday's weekly IVIG appointment. We would love for him not to be hooked up to an IV during the night, but understand his body is working extra hard to flush out all of the medicines he is taking. The best news of all from today's appointment is Hunter's platelet count is 74,000! Although, unintentionally we were brought back to Earth when a Physician's Assistant mentioned we are a little over a third of the way through our post transplant time in Seattle if all goes well. A third?! Really?!
Hunter's schedule is going to quickly pick up though. He was evaluated by a Physical Therapist yesterday. He begins twice weekly visits the week of the 16th until our undetermined return to L.A. Next week Hunter will meet with an Occupational Therapist and a Speech Therapist to be assessed. Occupational and speech therapy could possibly add another two to four appointments to Hunter's weekly schedule. A busy schedule will get no complaints from us though. We look forward to getting Hunter as healthy and fit as we possibly can before returning home.
We learned from Hunter's Nutritionist that he is exceeding his calorie intake goal, including protein and calcium goals. He is also very close to meeting his fluid intake goal, but will remain on nightly IV hydration. The team will reassess his need for this at Friday's weekly IVIG appointment. We would love for him not to be hooked up to an IV during the night, but understand his body is working extra hard to flush out all of the medicines he is taking. The best news of all from today's appointment is Hunter's platelet count is 74,000! Although, unintentionally we were brought back to Earth when a Physician's Assistant mentioned we are a little over a third of the way through our post transplant time in Seattle if all goes well. A third?! Really?!
Hunter's schedule is going to quickly pick up though. He was evaluated by a Physical Therapist yesterday. He begins twice weekly visits the week of the 16th until our undetermined return to L.A. Next week Hunter will meet with an Occupational Therapist and a Speech Therapist to be assessed. Occupational and speech therapy could possibly add another two to four appointments to Hunter's weekly schedule. A busy schedule will get no complaints from us though. We look forward to getting Hunter as healthy and fit as we possibly can before returning home.
Sunday, November 1, 2009
Day +38 (Nurses ...)
It's amazing how people you didn't even know six or seven weeks ago can come into your life and make an impact that will last a lifetime. The inpatient nurses of the Seattle Cancer Care Alliance did just that and solidified in our minds we made the right decision to bring Hunter to Seattle for his bone marrow transplant. The nurses not only took care of us as patients, they took care of us as people. They saw us through the chemo, hives, itching, crying, anger, throw up, nose bleeds, diaper leaks, and so much more. They explained, supported, calmed, and at times even nourished us. One nurse in particular makes a mean peanut butter and jelly sandwich.
I suppose it makes complete sense being with the nurses 24 hours a day, many working twelve hour shifts, and going through something so intense. It's a situation where it's impossible not to get to know someone on a personal level. Our connection with the nurses was one of the reasons our discharge was sad. Hunter was completely spoiled during his time in the hospital as were we. We know he misses his primary care nurses because he tells us so everyday, "I miss (Nurse) and (Nurse) and (Nurse)." The day we left the hospital he said, "Hey, where's my hug?" each time we passed a nurse on the way out. He definitely felt the love and so did we.
I suppose it makes complete sense being with the nurses 24 hours a day, many working twelve hour shifts, and going through something so intense. It's a situation where it's impossible not to get to know someone on a personal level. Our connection with the nurses was one of the reasons our discharge was sad. Hunter was completely spoiled during his time in the hospital as were we. We know he misses his primary care nurses because he tells us so everyday, "I miss (Nurse) and (Nurse) and (Nurse)." The day we left the hospital he said, "Hey, where's my hug?" each time we passed a nurse on the way out. He definitely felt the love and so did we.
Friday, October 30, 2009
Wednesday, October 28, 2009
Day +34 (The first twenty-four hours ...)
Yesterday we were excited, anxious and actually a little bit sad to finally leave Children's Hospital. The last twenty-four hours have been a whirlwind as we are trying to negotiate life on our own again. There are many new and important details to living in the outside world with an immune suppressed child.
Our first night was a bit comical, after the fact. We had to draw and administer what seemed liked a Longs Drugs of medications, and we had to connect a bag of nightly hydration to Hunter's Central Line. The medication part wasn't too bad. It certainly helps that one of us has a background in pharmacy. Hunter doesn't mind taking the meds orally, and everything is written out for us on a spreadsheet.
Connecting his nightly bag of fluids was another story. We got everything ready thinking we'd have plenty of time for the fluids to finish before we needed to leave this morning for Hunter's outpatient appointment. We might have had enough time if I hadn't spiked the bag with the IV tubing in the wrong opening. In my defense the bag the Home Infusion Services team used during our instruction at the hospital was completely different than the bag that showed up at our apartment. Luckily, after a lot of cursing, machine beeping, Hunter crying and a call from the Home Infusion nurse on duty, we figured out how to correctly spike the bag and connect Hunter to his necessary hydration. Definitely not as easy as the practice dummy we used the day before!
Now that we are at the Ronald McDonald House a concern we have as parents is keeping ourselves well rested and well fed, which isn't always easy. We found ourselves running out the door this morning to Hunter's outpatient appointment without eating breakfast. As Hunter's primary caregivers we realize we need to make a conscious effort to take care of ourselves, including flu shots tomorrow.
Hunter is doing well. His ANC is about 5,000 and his new marrow shows signs of creating platelets! Hunter's platelet count increased on its own (for the first time) for three straight days. He currently has 50,000 platelets. Those who've followed Hunter's journey from the beginning might remember he's had less than 5,000 platelets for the majority of his life. We are excited to see how these numbers continue to improve. Hunter's outpatient appointments, presently scheduled two days a week, will be adjusted as needed.
Hunter struggles some to get around on his own, but has improved just by being out of the hospital. He doesn't have the balance, stability and endurance he had prior to being admitted. However, he certainly has the tenacity. We look forward to getting him involved with the Physical and Occupational Therapists soon. Hunter's speech has picked right back up. He talks nonstop, asking question after question and telling stories to people without any reference point. If you ask him a question like "red or blue?" he'll answer with an "I think" at the end. "Blue I think."
It's definitely colder here in Seattle than what we are used to in L.A. When we go outside Hunter wears a hat to protect his bald head. So for the first time in his life, he is wearing a baseball cap with a hoodie pulled over it, certainly a glimpse of the not too distant future.
Our first night was a bit comical, after the fact. We had to draw and administer what seemed liked a Longs Drugs of medications, and we had to connect a bag of nightly hydration to Hunter's Central Line. The medication part wasn't too bad. It certainly helps that one of us has a background in pharmacy. Hunter doesn't mind taking the meds orally, and everything is written out for us on a spreadsheet.
Connecting his nightly bag of fluids was another story. We got everything ready thinking we'd have plenty of time for the fluids to finish before we needed to leave this morning for Hunter's outpatient appointment. We might have had enough time if I hadn't spiked the bag with the IV tubing in the wrong opening. In my defense the bag the Home Infusion Services team used during our instruction at the hospital was completely different than the bag that showed up at our apartment. Luckily, after a lot of cursing, machine beeping, Hunter crying and a call from the Home Infusion nurse on duty, we figured out how to correctly spike the bag and connect Hunter to his necessary hydration. Definitely not as easy as the practice dummy we used the day before!
Now that we are at the Ronald McDonald House a concern we have as parents is keeping ourselves well rested and well fed, which isn't always easy. We found ourselves running out the door this morning to Hunter's outpatient appointment without eating breakfast. As Hunter's primary caregivers we realize we need to make a conscious effort to take care of ourselves, including flu shots tomorrow.
Hunter is doing well. His ANC is about 5,000 and his new marrow shows signs of creating platelets! Hunter's platelet count increased on its own (for the first time) for three straight days. He currently has 50,000 platelets. Those who've followed Hunter's journey from the beginning might remember he's had less than 5,000 platelets for the majority of his life. We are excited to see how these numbers continue to improve. Hunter's outpatient appointments, presently scheduled two days a week, will be adjusted as needed.
Hunter struggles some to get around on his own, but has improved just by being out of the hospital. He doesn't have the balance, stability and endurance he had prior to being admitted. However, he certainly has the tenacity. We look forward to getting him involved with the Physical and Occupational Therapists soon. Hunter's speech has picked right back up. He talks nonstop, asking question after question and telling stories to people without any reference point. If you ask him a question like "red or blue?" he'll answer with an "I think" at the end. "Blue I think."
It's definitely colder here in Seattle than what we are used to in L.A. When we go outside Hunter wears a hat to protect his bald head. So for the first time in his life, he is wearing a baseball cap with a hoodie pulled over it, certainly a glimpse of the not too distant future.
Tuesday, October 27, 2009
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