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.

Tuesday, October 27, 2009

Sunday, October 25, 2009

Day +30/+31 (6 weeks ...)

It is hard to believe Hunter was admitted to Seattle Children's Hospital six weeks ago today. There have been a variety of ups and downs and points where time literally stood still. However, the pace is definitely picking up as we move toward Hunter's discharge day, potentially this Tuesday! Hunter continues to improve and has made strides in his eating and drinking. He is completely off IV nutrition, and thankfully it looks like he will be discharged without a feeding tube. Tonight Hunter's last IV medication was switched to oral, and he handled it like a veteran. He will leave on Tuesday with a minimum of ten medications he will take around the clock. One of the largest issues we are negotiating is Hunter's emotional breakdowns due to steroids. There are moments, long and short, where he absolutely loses his marbles. His emotions fluctuate between extreme mania, violent rage and profound sadness. We are trying to find a balance between disciplining Hunter and supporting him. Hunter's steroid dose will gradually decrease every five days, ending mid-December. Hopefully, this combined with good food and rest will lower the frequency and intensity of these episodes.

Friday, October 23, 2009

Day +29 Part 2 (Early results ...)

We didn't expect test results from yesterday's blood draw until Monday, however we learned this afternoon that Hunter is 100% donor engrafted! This is a very important milestone in Hunter's recovery and we are thrilled.

Day +28/+29 (The outside world ...)

Hunter had a four hour pass to the outside world Wednesday and Thursday. We used this time to enjoy the comfort and familiarity of our Ronald McDonald House apartment both days. We felt our apartment was the safest option as we did not want to expose Hunter to anything unnecessarily. Wednesday we took our car for the excursion due to the unforgiving Seattle rain. However, yesterday the weather relented and allowed me to pull Hunter, his lamb, his blanket and his pacifier in a red wagon to the apartment building and back. He happily identified the various vehicles passing by. Hunter was very excited to see his toys, many of them new thanks to several care packages. He received a Thomas the Train blanket and wanted to sit on it immediately, sharing the names of all the characters. It was good for us to see some of that Hunter sparkle while he enjoyed himself in his old stomping ground. Hunter isn't very steady on his feet since his transplant, so he definitely needed the exercise moving around the rooms. We were very pleased that on both days he ate a good lunch, breaded fish fillet dipped in mustard with an applesauce chaser. Admittedly, Hunter spent the majority of his time asleep. It was the first time in a long time he was able to sleep uninterrupted. Unfortunately, we had to wake him both days to return to the hospital. Luckily, when we did he simply mentioned the things he wanted to take with him and the things and people he missed at the hospital.

Wednesday, October 21, 2009

Tuesday, October 20, 2009

Day +25/+26 (Field trip ...)

Hunter is now officially off his IV pain medication. This is a major step towards his being released into outpatient care here in Seattle. I never thought I would say it, but we are thrilled with the prospect of returning to our Ronald McDonald House apartment. The doctors have converted the majority of Hunter's IV medications to oral. He isn't a fan of taking oral medicines like he was before being admitted, however he manages to take them and keep them down. Unfortunately, he's taken a couple steps backward with his eating and is still on fifty percent of his IV nutrition. We spend a lot of time distracting, coaxing, bartering and threatening Hunter to get him to eat. When he is discharged he may need a feeding tube, as well as IV fluids, which is an absolute. We received the results of Hunter's most recent nasal wash. He finally cleared parainfluenza! However, he tested positive for bocavirus. Luckily, he does not need to remain in isolation for this particular virus unless he is symptomatic, which thankfully he is not. Also, this result will be double checked. This afternoon we roamed around the unit at our leisure, free of Hunter's IV pole. His ANC is 2240. This number, combined with Hunter not constantly on IV, allows us to take a field trip tomorrow! Although his new immune system has a LONG way to go, we get to take him out of the hospital for some fresh air and activity for about two hours. We are very excited since Hunter has been inside the hospital since September 13th.

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

Day +23/+24 (Status quo ...)

Hunter remains on the mend. He's eating more and spending more time awake. Although both could potentially be attributed to the steroids, we are happy with his progress. The doctors continue to scale back his IV pain drip and other IV medications as well. They will not check his liver function every day as they believe he is over the VOD hump. The numbers regarding his liver look much improved so we are reassured by that. Tomorrow they will decrease Hunter's IV nutrition to half of what he started on.

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

Day +21/+22 (Improvement ...)

Hunter is returning to his old self slowly but surely. He spends more time awake but tires easily. Hunter eats small amounts of food, although he loses interest quickly. Yesterday he got out of his crib and took "mini" laps around his "mini" room. He even attempted to enter the hallway, but can't since he is still in isolation for parainfluenza. We hope he clears his next nasal wash on Monday so he is free to roam around the unit. I imagine he'll want to stop by Ashley's room. Honestly, I can't remember the last time he was out of his crib for anything other than his daily bath. The doctors are pleased with Hunter's progress, especially considering where he was at this time last week. They have further spread out his anti-nausea medicines and scaled back his IV pain drip. Also, he is no longer on any form of Lasix. Hunter's Attending Physician said Hunter has clinically diagnosed acute GVHD of the liver, skin and possibly of the gut. He will remain on steroid therapy to treat GVHD. The doctors mentioned they may decrease the dosage in a couple of days, although Hunter will be on steroids for approximately two and a half months. Hunter's blood pressure has been high and he receives medicine to treat this too.

Wednesday, October 14, 2009

Day +19/+20 (Like a newborn ...)

A difficult thing for me as a parent, probably like every other parent, is to hear my children cry. However, recently, the most difficult thing is to hear Hunter cry and not know what to do about it, or not be able to do anything about it.

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

Day +18 (The 5 major requirements to be discharged ...)

Hunter's today reads very similar to Hunter's yesterday so I want to take a minute to share our short-term goals for him. Hopefully, achieving these goals will allow Hunter to be discharged into outpatient care here in Seattle. It almost seems silly to be sharing these after Hunter's brief visit to the ICU for VOD this past week. However, we are looking forward with all the positivity we can muster.

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

Day +17 (Today's News...)

Today has been much like yesterday with Hunter sleeping most of the time. He had his bath, watched Toy Story, read books, and wrote on his white board. Hunter's close friend from the floor, Ashley, and her dad stopped outside our door to visit. Before the door opened all the way, Hunter said "Hi Ashley!" We truly appreciate their friendship.

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

Day +16 (Top ten ...)

1. The elevated counts regarding Hunter's liver are slowing decreasing. This is good news.

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

Day +15 (Back to the Transplant Unit ...)

It's Grandma Marcia to share Hunter's day...

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

Day +14 (Hunter is where he needs to be...)

Hello, Grandma Marcia here... I've been asked to write today's update.

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

Day +13 (The good and the bad ...)

The good news is Hunter's morning lab results show early signs of donor engraftment.

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

Day +12

Hunter had a rough day. He is currently taking his second nap since he woke up this morning. His temperature reached a high of 105 degrees, making him very uncomfortable. It seemed sitting in my lap had a calming effect. Sadly, he spends a lot of time whimpering when he is awake. The nurses give him Tylenol every four hours to keep his fever down and possibly help his comfort level. This is the third day in a row his blood pressure has been high. He received two doses of Lasix earlier to lower it, which created many wet diapers. Also, his belly is huge, melon shaped. Hunter’s Attending Physician ordered an abdominal x-ray this afternoon. The initial report did not reveal anything worrisome. However, we are awaiting further results.

Monday, October 5, 2009

Day +11 (It's back ...)

Hunter's nasal wash revealed he has parainfluenza again. This explains his fevers and runny nose. Also, we now realize his cough was not just related to his mucositis. Hunter's Attending Physician isn't overly concerned at this point. She said they will continue to monitor him closely for any signs of respiratory distress. Subsequently, Hunter is extremely tired. He woke up at 5:30 am because he was retching bile. However, he managed to fall back asleep for an hour or so, but was up for good by 7:30. He took a two hour nap around noon after his bath, but still managed to pass out by 6:30 this evening. He had a fairly busy day for being a bit sleep deprived. He received platelets first, then he received two drugs. One drug, Lasix, was to promote urine output since his blood pressure was high. The other drug was his final dose of methotrexate, an immunosuppressant. This afternoon Hunter went to radiology for his weekly chest x-ray, which the doctor said looked good. Our isolation status was taken to another level with today's news. Hunter is a prisoner in his crib and we are prisoners in his room, as we cannot use the unit's common areas. On the bright side, at least we are together.

Sunday, October 4, 2009

Day +10 (Isolation ...)

Today was not one of Hunter's better days. He remained in good spirits even though his energy level was low. He spent a lot of time in his bed after waking up this morning with a temperature and high blood pressure. Hunter's Attending Physician noticed a rash beginning on his arms as well. She said it was quite normal and a possible sign of engraftment, although it's relatively early for that. He developed a runny nose before his nap, so the nurse collected a sample for testing. In the meantime, Hunter goes into isolation for the next five days. The nurses will put on gowns and masks before entering the room and we are not allowed into the family areas. They want to be cautious because Hunter suffered from parainfluenza prior to being admitted. Hunter woke up from his nap and threw up several times, mostly bile. It amazes me he has anything to throw up since he doesn't eat or drink. The nurses are giving him medicine for his high blood pressure, temperature and nausea, and keeping an eye on his rash. It could be better but it could be way worse. Honestly, tomorrow we hope it's a little bit better.

Saturday, October 3, 2009

Day +9

Today has been another good day, slow and uneventful. Hunter received platelets again this morning and then enjoyed a leisurely Aveeno soak in the tub. He does a great job entertaining himself in his crib with a variety of toys, games and books. We decided to turn off the television for the last three days. He spends a lot of time mimicking the doctors' and nurses' daily routines with him. He certainly puts them through their paces and makes sure they don't forget any steps in their examination. He often helps the nurses with their paperwork, blood pressure and temperature reads, and the cleaning and flushing of his Line. One small concern we have is his itching. Hunter is slowly starting to complain his bottom is bothering him. Right now it is something we are monitoring.

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

Day +8

I was planning to post "it was another quiet day." However, as soon as I got on my computer, Hunter decided it was time to pretend he was Mount Vesuvius. Luckily, we were able to clean him up quickly as his bout of nausea passed without much fanfare. Now he's back to his normal self, cuddling with his stuffed tiger and thoroughly cleaning her Line. Earlier in the day he received another platelet infusion, as well as his weekly IVIG infusion. He is fairly hoarse from throwing up and mucositis so, believe it or not, he doesn't talk constantly. When he does speak he cracks us up. He was very concerned this afternoon as he could hear one of his friends crying across the hall. He kept telling us, "Carter's sad. Poor Carter." We asked him if he wanted us to close the door so he wouldn't have to listen to Carter crying. He said no because he wanted to make sure his friend was ok. We went on a walk after his bath and we passed the Charge Nurse's office. Hunter turned back around, went into the office and said, "Hello, everybody!" He then went up to the Charge Nurse and said, "You come with me. C'mon, walk with me." She actually did until Hunter came across another nurse he wanted to walk him the rest of the way to his room. Hilarious. Hunter had his weekly visit from his Side by Side ( volunteer, Allison (Wonderland). He really enjoys the company and we are thrilled to have the support.
He had a great night last night. We are hoping for another tonight, especially me since I'm on duty!

Thursday, October 1, 2009

Day +7 (One week later ...)

Hunter's nose bleed last night finally stopped/clotted after about an hour. He quickly fell asleep and snored his way through most of the night. He received a platelet transfusion before midnight and his level rose nicely. He woke up this morning energized and happy. The doctors are amazed by how well he is doing. The Attending Physician looked at Hunter today and said, "Are you sure you had a transplant?" However, we remain cautiously optimistic and realize things will most likely get worse before they get better.

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.