1. We finished another busy week.
2. Hunter is doing very well.
3. We have a three day weekend.
4. Hunter's platelet count increased significantly after his first ever platelet transfusion.
5. I attended a food preparation for immune suppressed patients class provided by the Fred Hutchinson Cancer Research Center.
6. Seattle had a blackout yesterday on the hottest day ever recorded. The temperature reached 103 degrees.
7. Our mailing address: C/O The Ronald McDonald House, 5130 40th Avenue NE, Seattle, WA 98105
8. Hunter continues to make new friends at an unprecedented rate.
9. We will have dinner at a very dear friend's house tomorrow night, wonderful support.
10. Hunter will have his Hickman Line placed on Tuesday, as well as a bone marrow aspiration.
11. Thank you for your continued support and prayers.
Thursday, July 30, 2009
Sunday, July 26, 2009
Seattle's Aquarium
Shouldn't we all take time out to look at the world through a child's eye, stopping to smell the flowers as we go?!Saturday, July 25, 2009
Fusion
Wow! We've been busier than we anticipated and it's only been the first few days. Hunter has a lot of tests to complete and we have a lot of meetings to attend before he is actually admitted to Children's on August 8th. It still plays out like a bad dream after all of this time. However, I realize that I'm not going to wake up until we see Hunter through this. We remain positive and take strength from the other parents and children who surround us here at the Ronald McDonald House.
Thursday was busy but went pretty smoothly. We learned that our insurance coverage is excellent, Hunter remained very patient for an EKG and we had a nice conversation with the Child Life Specialist followed by an instructional meeting with the nutritionist on staff. That was all prior to noon.
I should mention here that after witnessing Hunter's tornado of excitement on Wednesday the nurses and other staff members took bets on how many attempts it would take Hunter to get his EKG done. The funny thing is it only took him three tries, less than five minutes. The nurse said she could have used the first reading if she needed to. They didn't realize that for a two year old Hunter gets down to business when he needs to.
We then had our afternoon meeting with the doctor on staff this month. I attended this particular meeting via conference call since Hunter was back in our room napping. The first note I took was the first thing the doctor, who has thirty five years of experience, said after a brief round of introductions. She said, "Hunter will not remember this experience." That one statement allowed me to breathe deeply before a very informative but still difficult conversation about Hunter's upcoming journey.
Tentatively, Hunter will be admitted on Saturday, August 8th. He begins chemotherapy on Sunday, August 9th. He will then have a day off from chemotherapy on Monday, August 17th. His transplant is scheduled for Tuesday, August 18th. The three chemotherapy drugs they will use are Busulfan, Cytoxan and ATG. They will also use a variety of drugs to help prevent side effects from these three drugs.
Friday was a little bit trying and the day ended up being a bust. Initially, Hunter was only scheduled for a chest x-ray. We thought we would get that out of the way early since we could do it anytime between the hours of 8am and 5pm. However, we quickly learned that things have a way of getting added to your master schedule. Hunter had another blood draw at 8:45. This time we were prepared and used a topical numbing cream on the inside of his arm prior to his appointment. Afterwards, we had a meeting with Seattle Children's Palliative Care Consultant at 11:30. Things got a little tricky after this meeting because it was already 12:15 and we needed to get back to The Fred Hutchinson Center, eat lunch and be at Hunter's first ever platelet infusion at 1:00.
We made it to his infusion at 1:05, which wasn't too bad considering Hunter was literally, I'm not kidding, bouncing off the walls at lunch. He was getting tired of being cooped up and just tired period. The poor boy still naps from 1:00 to 4:00 more days than not. Anyway, we waited and we waited and we waited some more. At some point, about a half an hour later, we asked how much longer it would be. The receptionist told us that there were no more infusion rooms available and that she didn't know when one would become available. So, for those of you who know Patrick, that was absolutely the wrong answer. He stormed up to pediatrics looking for someone, anyone to help us get the show on the road. He was gone what seemed like forever and, of course, Hunter looked at me with a great big smile and said, "I'm pooping, Daddy, I'm pooping!" I just told myself that when Patrick came back the matter would be situated, and that I would be able to change Hunter's poopy diaper. Well, Patrick came back with little more information but he did come back with two $5.00 vouchers to the cafeteria. Some poor nurse who ordered the platelets panicked because Patrick told her that we were just going to leave and that they could figure out what to do later. Once I got Hunter changed, surprisingly or not, a room became available.
This is where things went from bad to worse. We finally got into Hunter's room and he had just enough time to charm a few more people when the nurse told us that they wouldn't have his platelets until a little after 3:00. We were basically just coping at this point and figured it wouldn't be too bad because Hunter was laying on a hospital bed, wrapped in warm blankets and we'd broken out his sleeping time only security blanket and pacifier. The staff began to take his vital signs and was interested in placing his IV so that they'd be prepared when his platelets arrived. Two agonizing lengthy sticks later his IV was placed. Things seemed to be falling into place. Wrong! Our lead nurse came in the room and said the transfusion was scrapped for the day! The computers went down where the blood products were located and nothing could go out until they were back up. What?! Cruel joke, right? Wrong. She informed us that we would need to have the infusion done the next morning, this morning, at 8:00. Wow, really?! Yes, really. Then we had to decide whether or not to leave the placed IV in Hunter's arm with a protective sleeve over it or if he should just have the IV placed again in the morning. Umm, how about no and no?! Unfortunately, we chose to have the IV replaced.
Luckily, this morning went very well. We made it to the appointment on time. They were ready and waiting for us. Hunter got to sit on my lap the entire time. They placed his IV on the first try. He had no allergic reaction to the platelets. He got to watch his first movie, Toy Story, from start to finish. Tomorrow we will reward his bravery and patience by going to the aquarium AND the zoo! He will have the entire day to just be a two year old before we start another busy week.
Thursday was busy but went pretty smoothly. We learned that our insurance coverage is excellent, Hunter remained very patient for an EKG and we had a nice conversation with the Child Life Specialist followed by an instructional meeting with the nutritionist on staff. That was all prior to noon.
I should mention here that after witnessing Hunter's tornado of excitement on Wednesday the nurses and other staff members took bets on how many attempts it would take Hunter to get his EKG done. The funny thing is it only took him three tries, less than five minutes. The nurse said she could have used the first reading if she needed to. They didn't realize that for a two year old Hunter gets down to business when he needs to.
We then had our afternoon meeting with the doctor on staff this month. I attended this particular meeting via conference call since Hunter was back in our room napping. The first note I took was the first thing the doctor, who has thirty five years of experience, said after a brief round of introductions. She said, "Hunter will not remember this experience." That one statement allowed me to breathe deeply before a very informative but still difficult conversation about Hunter's upcoming journey.
Tentatively, Hunter will be admitted on Saturday, August 8th. He begins chemotherapy on Sunday, August 9th. He will then have a day off from chemotherapy on Monday, August 17th. His transplant is scheduled for Tuesday, August 18th. The three chemotherapy drugs they will use are Busulfan, Cytoxan and ATG. They will also use a variety of drugs to help prevent side effects from these three drugs.
Friday was a little bit trying and the day ended up being a bust. Initially, Hunter was only scheduled for a chest x-ray. We thought we would get that out of the way early since we could do it anytime between the hours of 8am and 5pm. However, we quickly learned that things have a way of getting added to your master schedule. Hunter had another blood draw at 8:45. This time we were prepared and used a topical numbing cream on the inside of his arm prior to his appointment. Afterwards, we had a meeting with Seattle Children's Palliative Care Consultant at 11:30. Things got a little tricky after this meeting because it was already 12:15 and we needed to get back to The Fred Hutchinson Center, eat lunch and be at Hunter's first ever platelet infusion at 1:00.
We made it to his infusion at 1:05, which wasn't too bad considering Hunter was literally, I'm not kidding, bouncing off the walls at lunch. He was getting tired of being cooped up and just tired period. The poor boy still naps from 1:00 to 4:00 more days than not. Anyway, we waited and we waited and we waited some more. At some point, about a half an hour later, we asked how much longer it would be. The receptionist told us that there were no more infusion rooms available and that she didn't know when one would become available. So, for those of you who know Patrick, that was absolutely the wrong answer. He stormed up to pediatrics looking for someone, anyone to help us get the show on the road. He was gone what seemed like forever and, of course, Hunter looked at me with a great big smile and said, "I'm pooping, Daddy, I'm pooping!" I just told myself that when Patrick came back the matter would be situated, and that I would be able to change Hunter's poopy diaper. Well, Patrick came back with little more information but he did come back with two $5.00 vouchers to the cafeteria. Some poor nurse who ordered the platelets panicked because Patrick told her that we were just going to leave and that they could figure out what to do later. Once I got Hunter changed, surprisingly or not, a room became available.
This is where things went from bad to worse. We finally got into Hunter's room and he had just enough time to charm a few more people when the nurse told us that they wouldn't have his platelets until a little after 3:00. We were basically just coping at this point and figured it wouldn't be too bad because Hunter was laying on a hospital bed, wrapped in warm blankets and we'd broken out his sleeping time only security blanket and pacifier. The staff began to take his vital signs and was interested in placing his IV so that they'd be prepared when his platelets arrived. Two agonizing lengthy sticks later his IV was placed. Things seemed to be falling into place. Wrong! Our lead nurse came in the room and said the transfusion was scrapped for the day! The computers went down where the blood products were located and nothing could go out until they were back up. What?! Cruel joke, right? Wrong. She informed us that we would need to have the infusion done the next morning, this morning, at 8:00. Wow, really?! Yes, really. Then we had to decide whether or not to leave the placed IV in Hunter's arm with a protective sleeve over it or if he should just have the IV placed again in the morning. Umm, how about no and no?! Unfortunately, we chose to have the IV replaced.
Luckily, this morning went very well. We made it to the appointment on time. They were ready and waiting for us. Hunter got to sit on my lap the entire time. They placed his IV on the first try. He had no allergic reaction to the platelets. He got to watch his first movie, Toy Story, from start to finish. Tomorrow we will reward his bravery and patience by going to the aquarium AND the zoo! He will have the entire day to just be a two year old before we start another busy week.
Wednesday, July 22, 2009
We're here ...
We arrived in Seattle yesterday with no problems. We took an early flight out of Burbank airport, which is a breeze compared to LAX. We walked right up to the ticket counter, moved quickly through security and fed Hunter breakfast before boarding our plane. Hunter was thrilled when we landed in Seattle because we got to take a train to baggage claim and ride a shuttle bus to the rental car lot. I could easily lose my focus here and take a moment to discuss our car rental company experience. However, I will spare you the details of Fox Car Rental!
We booked our first two nights at the Marriott because there wasn't any space available at the Ronald McDonald House when we called on Monday. Luckily, while we were in the air, we received a call from the RMH letting us know that a small room opened up. We jumped at the opportunity. The three of us are now in a very modest dorm style room. They told us that they will move us to an apartment in the newer building when one becomes available.
Honestly, we are just happy to be in Seattle after a health scare last week. Hunter ended up in the hospital with what they think was toxic synovitis, which is similar to catching a cold in your hip. Who knew that was even possible? Anyway, he woke up last Monday morning and wasn't interested in standing or walking. He had a temperature of 102.4 by lunch. Also, he wasn't interested in eating. Now I know that when Hunter isn't interested in eating there's a definite problem. We spent most of Monday afternoon and evening in the ER. They let us go after running antibiotics through an IV. However, Hunter's fever jumped up to 104 Tuesday morning so we were admitted. They ran a battery of tests including a pelvic x-ray, an ultrasound, an MRI and a bone scan. Everything came back negative and Hunter's fever subsided so they released us on Thursday night. His appetite returned Friday night and his walking is back to normal, as well as his running! Thank you to those who were able to visit Hunter in the hospital and those who kept him in their thoughts and prayers.
Today was the first day of Hunter's two week evaluation period prior to him beginning chemotherapy. The following days are filled with various appointments so that we, as parents, understand the entire BMT process and so that Hunter is found fit for transplant. He had his first blood draw this morning and he did very well. He continues to say thank you when the technicians finish. Eventually, a central line will be placed into his chest, making his blood draws much easier. Tomorrow is a busy day with back to back appointments. We will meet with a financial representative, the child life specialist, the nutritionist, the doctor on service this month and Hunter will have an EKG. Friday is much lighter since Hunter only needs a chest x-ray, which can be done between the hours of 8am and 5pm. The weekend is ours so we are going to find something fun to do!
We booked our first two nights at the Marriott because there wasn't any space available at the Ronald McDonald House when we called on Monday. Luckily, while we were in the air, we received a call from the RMH letting us know that a small room opened up. We jumped at the opportunity. The three of us are now in a very modest dorm style room. They told us that they will move us to an apartment in the newer building when one becomes available.
Honestly, we are just happy to be in Seattle after a health scare last week. Hunter ended up in the hospital with what they think was toxic synovitis, which is similar to catching a cold in your hip. Who knew that was even possible? Anyway, he woke up last Monday morning and wasn't interested in standing or walking. He had a temperature of 102.4 by lunch. Also, he wasn't interested in eating. Now I know that when Hunter isn't interested in eating there's a definite problem. We spent most of Monday afternoon and evening in the ER. They let us go after running antibiotics through an IV. However, Hunter's fever jumped up to 104 Tuesday morning so we were admitted. They ran a battery of tests including a pelvic x-ray, an ultrasound, an MRI and a bone scan. Everything came back negative and Hunter's fever subsided so they released us on Thursday night. His appetite returned Friday night and his walking is back to normal, as well as his running! Thank you to those who were able to visit Hunter in the hospital and those who kept him in their thoughts and prayers.
Today was the first day of Hunter's two week evaluation period prior to him beginning chemotherapy. The following days are filled with various appointments so that we, as parents, understand the entire BMT process and so that Hunter is found fit for transplant. He had his first blood draw this morning and he did very well. He continues to say thank you when the technicians finish. Eventually, a central line will be placed into his chest, making his blood draws much easier. Tomorrow is a busy day with back to back appointments. We will meet with a financial representative, the child life specialist, the nutritionist, the doctor on service this month and Hunter will have an EKG. Friday is much lighter since Hunter only needs a chest x-ray, which can be done between the hours of 8am and 5pm. The weekend is ours so we are going to find something fun to do!
Friday, July 10, 2009
Departure Date Set ...
First, let me thank all of you who regularly follow Hunter's blog. I realize I haven't updated you recently, however, we were involved in yet another waiting game.
That being said, we finally have news to share. The Scheduling Coordinator from Seattle Cancer Care Alliance called us this past Tuesday to inform us of our time frame. We leave Los Angeles on Tuesday, July 21st. Hunter's two week evaluation period begins Wednesday, July 22nd.
I imagine the posts will pick up dramatically from here on out.
That being said, we finally have news to share. The Scheduling Coordinator from Seattle Cancer Care Alliance called us this past Tuesday to inform us of our time frame. We leave Los Angeles on Tuesday, July 21st. Hunter's two week evaluation period begins Wednesday, July 22nd.
I imagine the posts will pick up dramatically from here on out.
Subscribe to:
Posts (Atom)
