Sunday, December 27, 2009
Tuesday - We met with Hunter's immunologist, Dr. Ochs, regarding Hunter's current immune function, which isn't much, and "the plan" for the next nine months. Hunter will continue to receive IVIG until he is off immunosuppressant drugs, the timing of which is still to be determined. They will further evaluate his immune system then.
Wednesday - I attended a Long-Term Follow-Up class, time well spent. Hunter enjoyed himself in the afternoon running the halls with his new friend, Elizabeth. She is the three year old sister of a little boy here in the transplant apartment building.
Thursday - Hunter had another physical therapy appointment. He is making good progress, seemingly better than before transplant. He's certainly faster! The physical therapy team has done an excellent job with Hunter. We couldn't be more pleased.
Friday - Christmas! Hunter woke up to the presents Santa left for him. Can you say spoiled?! It was fun to sit around and watch him focus on the one toy we never anticipated him focusing on, a pint-sized Target semi. Who needs a Buzz Lightyear action figure or a remote control Caterpillar dumptruck? The highlight of our day was our trip to visit Ashley and her family. We were thrilled to see Ashley walk out of her room in a new Christmas sweatsuit and pick up Hunter for hugs and kisses.
Saturday - We spent our time lazing around the apartment in the morning. However, in the afternoon, we took a trip to Candy Cane Lane, a small neighborhood filled with Christmas lights and decorations. We had a nice time together and actually took a second trip through because it was so well done. Unfortunately, Hunter did not fully realize this would be his first night without his beloved pacifier. He cried, screamed, whined and tantrumed his little heart out. After forty-five minutes he let out a big yawn, had a brief discussion with himself about where his pacifier could possibly be and finally fell asleep until morning.
Sunday (today) - Hunter had an impromptu playdate in the hallway with Elizabeth. They ran each other ragged, and subsequently, he had an amazing nap! This afternoon one of our volunteers, Allison, entertained Hunter for almost two hours, allowing us to catch our breath and relax. We are very lucky to be matched with two involved and thoughtful volunteers. Tonight is night two of "Operation NO Pacifier"! I have to admit it's not easy blogging with an agitated two and a half year old in the next room. I gave it my best effort though!
We have plenty more appointments this week. Hopefully, we'll hear good news before it is all said and done. Wishing everyone a belated Merry Christmas!
Sunday, December 20, 2009
Wednesday - We received a visit from a nurse who has become a dear friend. She even brought us dinner!
Thursday - Hunter participated in a media relations photo shoot at the hospital highlighting the physical therapy department. He certainly enjoys being in front of the camera and the center of attention.
Friday - Our family paid a visit to our friends Ryan, 2, and Ashley, 17, who are currently inpatient on the unit. They both looked great and we pray for them daily.
Saturday - One of our Side-by-Side volunteers, Lynn, and her husband came over to entertain Hunter for two and a half hours, allowing us to have an early dinner at California Pizza Kitchen.
Sunday (Today) - Hunter had his first playdate since his transplant with another immune suppressed transplant patient, Zyreal, who lives in our apartment building. I think they wore each other down and wore each other out. It is such a good feeling to see Hunter having so much fun and our not worrying constantly about bumps and bruises.
Wednesday, December 16, 2009
Monday, December 14, 2009
Tuesday, December 8, 2009
This Thursday Hunter will have an extensive blood work up and skin biopsy procedure. The blood analysis will look at Hunter's current immune function, still in its infantile stages, and what percentage of his immune system is the donor's versus Hunter's previous system. On Day +28 we learned Hunter was 100% donor engrafted. We hope that remains the same, however the possibility exists some of Hunter's old immune system may still be present. Luckily, this doesn't necessarily create a problem, and as we understand it, would not impede our progress in returning to L.A.
The skin biopsy is a thirty second procedure for which, unfortunately, Hunter must be sedated. This means he will have to stop eating and drinking at a certain time late Wednesday night, early Thursday morning, and the potential for a cranky little man grows. Thankfully, his procedure is scheduled for 10:45 am and we hope it takes place on time. They explained to us the surgeon will remove an area of skin from Hunter's back side about four millimeters in diameter with something similar to a hole punch. This will allow the doctors to look at whether Hunter's skin cells are normal or show signs of GVHD. If Hunter has GVHD of the skin they will also be able to tell if it is acute or chronic, and to what degree, ranging from mild to severe.
Next week Hunter is scheduled for opthamology and dental exams. Each test will determine if Hunter is suffering from GVHD in either his eyes or mouth. The Physician's Assistant explained that for Hunter's particular disease, WAS, which is not cancer related, a follow up bone marrow aspiration is not necessary, music to our ears.
If these exams and analyses come back clean for GVHD and his immune function looks good the doctors will restart Hunter's steroid taper and begin our discharge paperwork. Again, while the idea of returning home is exciting it is also daunting. We were reassured by today's Attending Physician, who specializes in long-term issues faced by people who received bone marrow transplants as children. She let us know she will follow Hunter's care closely and the SCCA has twenty-four hour phone lines available for any and every question we may have.
Monday, December 7, 2009
Hunter attended his physical therapy appointment by himself today. His Physical Therapist and we wanted to see how he would perform without us there. We expected to see Hunter back in the waiting room long before the hour session ended. Boy, were we ever wrong! Apparently, he was much more focused without his parents watching his every move. Hunter was still going strong when we went back to retrieve him after fifty minutes, helping the PT put everything back in its original place.
We went to see Ashley and her mom after physical therapy, which has become part of our Monday, Thursday routine. Hunter enjoys seeing the Aven family, as do we. He dishes out hugs and kisses and takes turns sitting with Ashley and Ashley's mom, Tamara, remaining on his very best behavior. We can't help but feel inspired after our visits with them. We feel lucky to be able to call them friends.
P.S. Hunter's platelet count last Friday was 140,000!
Friday, December 4, 2009
Thursday, December 3, 2009
Hunter's clinic visit on Tuesday went well. He decided during his blood draw he wanted to sit in the exam room chair by himself as opposed to in my lap as usual. He said I needed to pull up a chair and sit next to him. "I'm a big boy, Daddy!"
We spent most of our clinic time with the Nurse and Physician's Assistant discussing Hunter's short-term plan. Initially, Hunter was supposed to taper off steroids by Sunday, December 13th. However, since Hunter's particular disease doesn't benefit from a small amount of Graft-Versus-Host-Disease like some others, the doctors decided to leave him on steroids through his Day 80 evaluation. This evaluation will be a detailed work up of where Hunter is post transplant. He will undergo a bone marrow aspiration, skin biopsy, opthamology and dental exams, and extensive blood analysis.
Today Hunter went to his physical therapy appointment. He continues to make progress and shows no signs of last week's movement issues. He truly enjoys the various activities since it is one of the few times during the week he gets out of our (isolation) apartment. Tomorrow Hunter has his routine blood work, weekly nasal wash and IVIG appointment, which is now every other Friday.
Hunter's physical therapy appointments are at Seattle Children's. We make a point to visit Ashley and her family before or after each appointment. Ashley recently finished her THIRD round of chemotherapy in her battle against AML. Please, please keep her in your thoughts and prayers. She is an amazingly strong young lady who loves our Hunter and has connected with him in a very special way. www.caringbridge.org/visit/ashleykealohaaven
Monday, November 30, 2009
Last Friday's blood tests revealed Hunter's platelets are holding steady at 125,000. We are quite pleased and look forward to tomorrow's blood draw, clinic and nutrition appointments.
Wednesday, November 25, 2009
Last Friday's platelet count was 118,000 and this Tuesday's was 130,000. We are looking forward to Friday's number. Again, a person's normal platelet range is between 150,000 and 400,000. Hunter still has many other counts needing to reach normal range. However, we are happy he has working platelets since this was one of the issues that plagued Hunter prior to transplant.
The one current concern we have is Hunter's movement. Initially, he seemed to bounce back well after being discharged from the hospital. He showed improvement each day and was walking, playing and moving similarly to before his transplant. We believed he had regained most of his strength and flexibility, knowing we needed to work on his endurance. However, he appears to have digressed recently. He walks with a very wide base and looks like his muscles are always tight. He even loses his balance at times and ends up on his rear. We are thankful he doesn't complain of any pain and attempts to get on with things per usual. It certainly hasn't prevented him from bouncing off our apartment walls! Can you say cabin fever? stir crazy?
The doctors and physical therapists are monitoring Hunter closely. His Attending Physician said if it doesn't resolve by early next week Hunter will most likely undergo an MRI, looking at his hip joints. She thinks if his movement issue lingers it may be either from one of two current medications or a residual side effect from one of the chemotherapy drugs.
We are hoping it is a direct correlation of how hard the physical therapists are pushing him. However, better safe than sorry, right?!
P.S. The news out of L.A. is Hunter's little sister, Harper Aaliyah, began walking today. Her first birthday is a week from tomorrow. We tell ourselves we'll have many more milestones together as a family. However, I must admit these are difficult to miss.
Thursday, November 19, 2009
Yesterday Hunter had a great physical therapy appointment with a variety of activities. He bounced on two different trampolines and bowled. Hunter and another patient played with a small parachute, squatting to pick it up and stretching tall to release it. At the end of the session the therapist wanted Hunter to try yoga, but he wasn't having it.
We visited with one of our neighbors at RMH today. They are going home tomorrow, and we just realized they've been staying in the apartment directly below us. They made us smile when telling us how they said "Oh, Thumper's awake!" when referring to Hunter's early morning antics.
(Ghostwritten by Grandma Marcia)
Monday, November 16, 2009
Today Hunter had his first physical therapy appointment since his initial assessment. He suffers from sensory overload when he enters the mini-gym and struggles to concentrate on any one thing before settling down for his session. He reminds me of a hummingbird stumbling across a hundred flowers all to himself, floating around the room from toy to toy, ball to ball, activity to activity. He impressed us with his ability to figure out how to walk along a low balance beam while squatting to pick up plastic cupcakes every few steps. The boy even dismounted at the end when he got comfortable with what he was doing. I had to stifle a laugh at that point. We were pleased to learn he will be reevaluated next Monday to determine whether he needs further appointments. Initially, we were scheduled for twice weekly sessions through early January. Perhaps the circuit and cross training in the halls and on the stairs of the Ronald McDonald House have helped Hunter (Dad says tongue in cheek).
Truly the biggest news of the past few days is Hunter has gone "peepee in the big boy potty" three consecutive days! Does it get any better than that?
Friday, November 13, 2009
P.S. Please, please, please help Hunter (us) send out positive vibes, prayers and well wishes to his (our) friend Ashley!
Tuesday, November 10, 2009
Thankfully, Hunter has fallen back into his pre-transplant daily routine. He's back on his breakfast, lunch, snack and dinner schedule, as well as his nap and bedtime schedule. He even sleeps in an extra hour in the morning, which we certainly aren't complaining about. Initially, he was leery of going to sleep by himself since one of us slept by his bedside every night for six plus weeks. However, he seems to have gotten over it.
Saturday, November 7, 2009
Thursday, November 5, 2009
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
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
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.
Wednesday, October 28, 2009
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.
Sunday, October 25, 2009
Friday, October 23, 2009
Tuesday, October 20, 2009
P.S. Today Hunter figured out some parts of Finding Nemo are a little bit scary. He cried for Nemo when he was stuck in the fish tank at the dentist's office. We had to quickly switch to Toy Story. I wonder how long it will take before he realizes some parts of Toy Story are a little bit scary too.
Sunday, October 18, 2009
It's hard to believe Hunter has been in the hospital five weeks to the day. Initially we were told to plan on Hunter being in the hospital for "six weeks or so." If he continues to improve and has no other setbacks, he is on target to be released into outpatient care at "six weeks or so."
Friday, October 16, 2009
Wednesday, October 14, 2009
Hunter woke up in the early evening last night and cried and cried. I tried to hold him, comfort him and it didn't help. The nurse, after my prompting, gave him an extra dose of pain medicine. Although I wasn't certain he was actually in pain, as opposed to being extremely fatigued. He eventually quieted down and, after two solid hours, fell back asleep.
This morning, after what was for all intents and purposes a "good" morning, Hunter cried and cried. Again, I tried to hold him, comfort him but to no avail. The whole scenario was an instant replay of last night, except he fell asleep after an hour. And like last night, I'm left wondering what the reality of his situation was.
It reminds me of when Hunter and Harper were newborns. We spent so much time trying to determine if they were hungry, dirty, tired, gassy and the list goes on. We tried to figure out what each cry, whimper, yawn, coo and yelp meant. It took some time, but slowly we started to figure things out.
I sit here and think to myself Hunter's transplant was just twenty days ago. He is like a newborn. He's relearning how to eat, how to walk, how to talk/express himself, how to do most everything all over again. And we're relearning how and what to feed him, when to put him down for a nap, when and when not to push him.
I realize he'll have his good days and bad days. I suppose we will too.
P.S. Speaking of newborns, welcome to the world Cayden Rothfield and Soleil Wicks!
Monday, October 12, 2009
1. Engraftment (2 consecutive days with an ANC greater than 500) - Check. Hunter's ANC this morning was 948.
2. No fevers or active infections - Check. Knock on wood.
3. Tolerating some food - Hunter hadn't eaten in days until this morning. It might not seem like much but he ate four grapes, a bite of banana and a bite of graham cracker, a virtual feast.
4. Tolerating oral medicines - This has been a slight (tongue in cheek) struggle. Generally, Hunter only has one oral medicine in the morning and one in the evening. He fights us tooth and nail every step of the way. We take away his pacifier and security blanket among other items to get him to eventually comply (I know, I know, we're mean). It appears we have a way to go since he will have eight to fifteen (ish) oral medicines when we're on the "outside."
5. No IV narcotics - We scaled back Hunter's IV pain drip yesterday, but did not today. At times, he cries and we aren't sure what ails him: fatigue, pain or a combination of the two. I think it will take us some time to get a handle on, or a feel for this without trepidation or second guessing ourselves.
Sunday, October 11, 2009
Hunter's Lasix drip and IV narcotic have been decreased, and he is still on prednisone therapy.
His ANC was 803 today, so Hunter is considered engrafted! This means one of the five major requirements to be discharged from the hospital has been met!
Hunter's belly measured a bit smaller, and his intake and output started to even out. All of today's counts remained the same or improved.
Hunter looks like he spent the day at the beach as his skin has a reddish hue, another indication of Graft Versus Host Disease.
Although we are exhausted, we are very thankful for today's counts...
(Ghostwritten by Grandma Marcia)
Saturday, October 10, 2009
2. The doctors think Hunter might have Graft Versus Host Disease of the gut in addition to his liver. This can be managed through steroid therapy or other immunosuppressant drugs.
3. Hunter has not had a temperature since beginning prednisone therapy. He will have twice weekly labs to check for infections because steroids can mask a fever.
4. The doctors minimally lowered Hunter's Lasix drip to rest his kidneys, even though there is currently no issue with them. They have been working overtime the past few days and deserve a break.
5. Hunter is near engraftment. His ANC (based on the white blood cell count of his new immune system) was 700 today. The doctors consider engraftment to be two consecutive days above 500. This is encouraging, however this particular count fluctuates daily and could dip before going back up.
6. During rounds this morning Hunter's Attending Physician said, "We're not out of the woods yet but things seem to be moving in the right direction."
7. Hunter slept uninterrupted through the night and has been awake for a total of two hours today. He played games, read books and watched Toy Story.
8. We are happy to be back in the transplant unit. However, we lost our spacious suite and are now in a "closet" overlooking the psychiatric ward playground. We've certainly had an eyeful so far.
9. Thank you to Grandma Marcia for holding down the blog during a stressful time.
10. Thank you for all of your comments, texts, emails, Facebook messages, phone calls, voicemails, letters and care packages. We are extremely appreciative of the constant support.
Friday, October 9, 2009
Hunter slept all night and most of the day.
There were 20 doctors, nurses, and residents on "Hunter's Team" at morning rounds!
Hunter's condition is stable. After being in the ICU 24 hours, this afternoon Hunter returned to the Transplant Unit where he is being monitored closely. The Lasix drip continues, and Hunter has started to move fluids again. Although Hunter's intake remains positive, the numbers did not go up. The doctors think this is because of the predisone, an indication Hunter may have GVHD of the liver. He remains on the prednisone. Thankfully, there are no signs of a flare-up of the parainfluenza virus.
For the first day in his life, Hunter is grumpy, grumpy, grumpy. He does not want people touching him, pressing on him. He threw his pacifier and toy truck out of his crib, more than once. He took the stethoscope away from a doctor, who got another one that Hunter tried to take. One of the doctors said steroids sometimes turn toddlers into teenagers. It sounds as if Hunter is an "insta-teen"!
As long as Hunter's condition remains stable, Rhea will resume posting tomorrow.
Thursday, October 8, 2009
Know that Hunter is himself, interacting with and giving hugs to everyone; however, his BIG belly is the primary concern. Last night some of Hunter's drugs were switched to ones that are not as hard on his liver.
Hunter's team of doctors, which now includes a renal specialist, is working to determine whether his "unhappy liver" is caused solely by the VOD or by additional factors such as early GVHD (graft versus host disease). How Hunter's body reacts to the prednisone drip started this morning will help his doctors make that determination.
As a pro-active, precautionary measure, Hunter was moved to the ICU this afternoon. Hunter is able to receive treatments in the ICU which cannot be administered in his room. Hunter's kidneys are functioning, but not well enough. A Lasix drip has been started to help flush fluids from his body. If his kidneys need further assistance, this can be handled in the ICU as well. Hunter has not received any drugs to treat his parainfluenza virus. As his doctors know the predisone may cause the parainfluenza to flare up, they are prepared for that possibility.
Thank you all for your continued prayers and good thoughts...
Wednesday, October 7, 2009
The bad news is Hunter's morning ultrasound revealed he is suffering from Veno-occlusive disease.
"Veno-occlusive disease (VOD) is a potentially serious liver problem caused by high-dose chemotherapy and/or radiation. The blood vessels that carry blood through the liver become swollen and blocked. Without a supply of blood, the liver cannot remove toxins, drugs and other waste products from the bloodstream. Pressure and fluids build up in the liver, causing swelling and tenderness in the liver area. The kidneys may retain excess water (ascites) and salt, causing fluid to build up in the body and swelling in the legs, arms and abdomen.
"The symptoms of VOD include rapid weight gain, swelling, jaundice, an enlarged liver, pain or tenderness in the area of the liver, and accumulation of fluid in the abdominal cavity.
"There currently is no proven preventive therapy for VOD. When VOD is diagnosed, the medical team will take steps to prevent the more serious complications from developing. These include minimizing or eliminating the use of certain drugs that can aggravate the problem, relieving fluid buildup in tissues and organs with diuretics or dialysis, restricting salt intake, carefully monitoring fluid volumes in the body, and transfusing the patient with red blood cells.
"In most cases, VOD is mild or moderate, and the liver damage is reversible."
Please keep Hunter in your thoughts and prayers.
Tuesday, October 6, 2009
Monday, October 5, 2009
Sunday, October 4, 2009
Saturday, October 3, 2009
Our daughter, Harper, is ten months old today. We miss her very much. She is racing through her first year of milestones. We can't wait for the four of us to be reunited and healthy.
Friday, October 2, 2009
He had a great night last night. We are hoping for another tonight, especially me since I'm on duty!
Thursday, October 1, 2009
In the meantime, Hunter has made friends with another patient and her family. She is a seventeen year old high school student from Washington who spoils him with lollipops, which are the only things he considers eating. He remains on around the clock IV nutrition.
Wednesday, September 30, 2009
Tuesday, September 29, 2009
P.S. for Day +3 ... I can't believe I failed to mention that Hunter had a dance party in his room with four of the nurses. He's received several musical greeting cards, which he loves to show off. On Sunday he was showing every nurse who came to see him the cards. When the music started to play Hunter would dance. When the music stopped he would "freeze" with his hands on his ears. Well, one thing led to another and he had the nurses dancing and freezing with him. I have to say it was pretty cute because each of the nurses came in when they had a chance and danced with Hunter for a few minutes. And each nurse came back in for one last dance before leaving for the day. Hilarious.
Sunday, September 27, 2009
Hunter seems pain and itch free so we are very pleased. However, we noticed his hair is beginning to fall out. We may break out the clippers soon!
Saturday, September 26, 2009
Friday, September 25, 2009
Thursday, September 24, 2009
Wednesday, September 23, 2009
Thank you again for your continued support, prayers and well wishes. They are greatly appreciated.
Monday, September 21, 2009
Hunter spent most of the day sleeping after a surprisingly playful morning. His temperature continually fluctuates and he is, more or less, covered in hives. He watches either Cars or Elmo in Grouchland while he is awake. He still takes a few medications orally in the morning and evening. Although the doctors switched most of them to IV because it will become increasingly difficult for him to swallow. Unfortunately, he threw up his medications this evening. We gave him a bath, as they are required daily, and he actually seemed to enjoy himself. However, we experienced a moment of panic. His nose began to bleed when we were drying him off. Luckily, it stopped pretty quickly. The nurse said they will most likely draw his labs earlier than usual to check his platelet count. We expect he will need a platelet infusion soon. Tomorrow serves as a day of rest prior to his transplant. Hunter does not have an appetite anymore and refuses anything he is offered, food or drink. He will be placed on IV nutrition within the next twenty-four hours.
Sunday, September 20, 2009
Acyclovir - antiviral
Busulfan (Busulfex)* - conditioning (chemotherapy)
Ceftazidime - antibiotic
Cetirizine (Zyrtec) - antihistamine
Cyclophosphamide (Cytoxan) - conditioning (chemotherapy)
Diphenhydramine (Benadryl) - antihistamine/antinausea
Fluconazole - antifungal
Gentamicin - antibiotic
IVIG (Gammagard Liquid) - boost immune system
Lansoprazole (Prevacid) - antacid
Lorazepam (Ativan) - antinausea
Lymphocyte Immune Globulin (Atgam) - conditioning (chemotherapy)
Mesna - bladder protectant
Methylprednisolone - anti-inflammatory (steroid)
Methotrexate (Amethopterin)** - graft versus host disease prevention
Metoclopramide (Reglan) - antinausea
Montelukast (Singulair) - antihistamine
Morphine - pain reliever
Ondansetron (Zofran) - antinausea
Pantoprazole - antacid
Poly-Vi-Sol - multivitamin
Sulfamethoxazole and Trimethoprim (Bactrim) - antibiotic
Tacrolimus*** - graft versus host disease prevention
Ursodiol - prevention of hepatic sludge/Veno-Occlusive Disease
Vancomycin - antibiotic
** starts one day after transplant
*** starts one day before transplant
He's been asleep ever since. His blood transfusion after his dose of Cytoxan went well. We will find out what his blood counts are during morning rounds. Hopefully, everything will be ok with his platelet transfusion yesterday and blood transfusion last night.
He is a little fussy when having his labs drawn from his Line or when having his diaper changed but he doesn't actually wake up. He's been talking in his sleep some, reciting his ABCs or counting to ten. Our night nurse was kind enough to change most of his diapers so that I could sleep, or should I say attempt to sleep?
He has a bit of a fever again this early morning so the nurse gave him some Tylenol. They would like to get his fever down some before chemo begins. Hunter's next dose of ATG is scheduled for 8:00 this morning. They will infuse it at a faster rate since he "tolerated" it well yesterday. Today it will last four to five hours.
Saturday, September 19, 2009
* ATG is a medicine made from horse serum that contains antibodies that help suppress the immune system. It helps to prevent the body from rejecting the new bone marrow cells from the donor. Also, ATG is used to treat graft-versus-host-disease. Some of the common side effects are fever, chills, rash or hives, decrease in white blood cells and platelet counts, and increased risk of infection.
4:00 pm IVIG infusion (2 hours)
6:00 pm Pre-Cytoxan hydration (4 hours)
10:00 pm Cytoxan (1 hour)
10:30 pm Hunter threw up twice ... Our nurse walked in and said, "Welcome to chemo!"
2:30 am Hunter (finally) fell asleep
7:00 am ATG skin test
8:20 am Platelet infusion (1/2 hour)
9:00 am Hunter woke up ... in a good mood!
9:35 am ATG (8 hours)
Friday, September 18, 2009
We changed his diaper and checked out his rear end. It's a little pink but doesn't look too bad yet. The nurse brought us some softer wipes, a cleaning spray and a diaper cream. He suffered only one other itching episode at 2:30, where he demanded I take his diaper off. He settled down for the rest of the night with a diaper change and some fresh cream. However, his itching must be serious because he is on Benadryl and Atarax.
He woke up this morning in a good mood. He gave his night nurse several hugs goodbye and told her, "Go. Go now." Also, upon meeting his day nurse, he began tickling her in inappropriate places. Luckily, he's only two.
He begins Cytoxan tonight at 10:00. We are bracing ourselves for any potential side effects.
Thursday, September 17, 2009
He has one more dose of Busulfan scheduled for 8:00 this evening. Tomorrow night he begins his second chemotherapy drug, Cytoxan.
He continues to do well overall, but his appetite is slowly dissipating.
Wednesday, September 16, 2009
He eats well, perhaps a bit more particular about his food choices, but he's stopped drinking almost completely. He remains uninterested in milk and juice of any sort, which used to be a special treat. Subsequently, he receives IV fluids for much of the day and night. The chemotherapy drugs are hard on his kidneys so the doctors want to make sure they are constantly flushed out. We change diapers regularly and, at times, still can't keep up with his output. Hunter actually leaked through two diapers/sets of pajamas last night.
He remains a trooper and as charming as ever. We have two volunteers who will begin working with our family regularly next week. Hunter met them on Monday. One of the women is Allison. Hunter decided that she must be Alice in Wonderland. Also, we have had the same nurse, Amber, the past two days. Hunter decided that her new name is Hamburger. What can we do but laugh?
Tuesday, September 15, 2009
Currently, he is out cold. A semi could drive through his room and he wouldn't move. Today's chemo starts now ...
Monday, September 14, 2009
He remains as outgoing as ever and has already won over several nurses. His speech and vocabulary are expanding daily and he honestly thinks he's a comedian. He's definitely keeping us on our toes with his constant energy and exuberance.
Sunday, September 13, 2009
Currently, Hunter is in his crib, which looks like a toddler jail cell, reading a book to himself while receiving an IVIG treatment. Unfortunately, it doesn't look like he will be able to fall asleep anytime soon since the nurse must take his vitals every fifteen minutes for the next hour.
Saturday, September 12, 2009
11:45 am Hunter drank his last cup of apple juice
2:45 pm We checked into our exam room at Children's Hospital
6:45 pm We (finally) spoke with the surgeon regarding both procedures
7:45 pm Hunter was put under anesthesia
9:00 pm We spoke with the surgeon while Hunter was in the recovery room
9:50 pm The recovery nurse carried a crying Hunter to us
She said, "He woke up, took one look at me and burst into tears."
10:05 pm Hunter downed a cup of apple juice and two popsicles
10:35 pm We were discharged from Children's Hospital
10:45 pm We arrived at our apartment at the Ronald McDonald House
11:00 pm Hunter ate wheat thins and strawberries and drank a cup of milk
11:15 pm Hunter went to sleep
Thursday, September 10, 2009
Hunter must stop eating by 8:00 am tomorrow. He is allowed only clear liquids until noon. His check in time at Children's Hospital is set for 2:45. We are not sure what to expect other than another long day and a very tired boy.
Wednesday, September 9, 2009
Tuesday, September 8, 2009
All of your prayers, positive vibes and/or well wishes are appreciated. Thank you.
Thursday, September 3, 2009
Hunter is scheduled for an IVIG infusion tomorrow. They will draw blood prior to this to further confirm the adenovirus test result. They will also test a stool sample.
Hunter will have another nasal wash and throat culture on Tuesday. Positive results of any kind will most likely result in another delay.
The doctor also mentioned nasal washes are performed on every pre-transplant patient, and Hunter is the only patient who has tested positive for two viruses in the past month.
We wait and we wait some more ...
Wednesday, September 2, 2009
Hunter had another nasal wash and throat culture today. It's unfortunate as he now anticipates the procedures. He sheds lots of tears right before and during, but bounces back as soon as it's over. Today, bouncing back included cleaning the nurse's stethoscope with an alcohol pad, as well as saying, "Thank you for my nasal wash!"
We should have the results tomorrow afternoon. I guess we'll hold our breath until then ...
PS. The three of us had lunch with a very close friend from college today, good times.
Sunday, August 30, 2009
PS. Was that too long for a tweet?
Monday, August 24, 2009
Today was a long day. Hunter received an infusion of IVIG*. We arrived at the SCCA before 8:00 am and didn't leave until after 4:00 pm. Honestly, Hunter does extremely well for a two year old who has to sit still with an IV in his arm for that amount of time. He loves the Child Life Specialist because she spoils him with toys, bubbles and coloring materials. She gave him his own coloring book, box of crayons and Play-Doh set to bring back to our apartment.
Overall, Hunter seems well. He had a blast in the game room once we returned to the Ronald McDonald House. He ran around in circles with a toy vacuum and shopping cart while learning how to play frisbee. He will have another nasal wash and throat culture on Wednesday.
* A blood product administered intravenously that contains immunoglobulins (antibodies extracted from the plasma of over a thousand blood donors).
Thursday, August 20, 2009
Friday, August 14, 2009
"Hunter's new donor is a committed 19 year old female, 10/10 match, same blood type/CMV status as Hunter. We can't ask for more than this in a donor."
Now we can return to Seattle without concerns regarding the donor. We will keep you posted!
Sunday, August 9, 2009
Wednesday, August 19th: RETURN TO SEATTLE
Thursday, August 20th: SCCA OUTPATIENT ARRIVAL
Friday, August 21st: DATA REVIEW CONFERENCE
Monday, August 24th: PLATELET TRANSFUSION
Tuesday, August 25th (am): HICKMAN LINE PLACEMENT
Tuesday, August 25th (pm): ADMITTED TO CHILDREN'S HOSPITAL/BEGIN DILANTIN
Wednesday, August 26th: BEGIN CHEMOTHERAPY (BUSULPHAN/CYTOXAN/ATG)
Thursday, September 3rd: DAY OFF
Friday, September 4th: BONE MARROW TRANSPLANT
Tuesday, August 4, 2009
"The donor we requested for product donation was HLA typed in a reputable laboratory, and was a 10/10 match with Hunter. However, the donor, as part of our protocol requirements, provided a fresh blood sample to our laboratory for HLA confirmatory typing to be completed. On Friday, I received an email message from our laboratory informing me that the confirmatory typing for Hunter's donor identified a discrepant typing result with the outside laboratory typing results, for the HLA-DQB1 loci (thus, one antigen mismatch with Hunter). I immediately telephoned our laboratory and had a conversation with our HLA specialist, who assured me that they will be typing this loci again, but felt confident their results were accurate. This is a very unexpected result. The donor's HLA-DQB1 in relationship with the donor's HLA-DRB1 is not even normally seen together."
"The good news is there are more donors that are a 10/10 match with Hunter. I spoke with the registry late on Friday afternoon, and we are moving forward with the donor processes with another excellent donor. This will cause a delay in the transplant date. We are hoping the delay this donor switch causes will not be too terribly long. As soon as we have word from the donor center, I will let you and your family know."
"I already have good news. The donor center successfully contacted the new donor by phone. The donor is very excited to plan on moving forward with our donation request. This donor is a 19 year old female, 10/10 HLA match, same ABO Rh and CMV status of Hunter. We are requesting a bone marrow harvest/product transport date (for infusion the same day) of 3-Sept-2009."
If this donor is truly a match we could possibly be headed back to Seattle in a couple of weeks. Our fingers are crossed. Meanwhile, we will try to rejuvenate and enjoy our time with family and friends.