Monday, January 31, 2011
Today is Day 0. We were admitted on Day -7 (read day minus 7). Tomorrow will be Day +1 (day plus 1). I know, rocket science! Everything counts up to or away from the transplant. I get the feeling that his life will be measured in countless ways from this day forward always referring to each day/month/year as post transplant. I tried to joke with William about this being a new birthday for him and another reason to celebrate, but he was more concerned that my head was blocking Tom & Jerry on the TV. That's good.
Upon entering William's room, wafts of peppermint would suggest we were conducting an aromatherapy session. Small plastic medicine cups with cotton balls and peppermint oil have been strategically placed around the room. It smells lovely, sort of. The substance, DMSO (DiMethylSulfOxide), used in the cryopreservation of the stem cells, is some potent smelling stuff. It has a pungent, slightly bitter, vegetable smell---a little like creamed corn and V8 juice. Try to imagine that odor. It's not offensive, just unpleasant. Anyway, he excretes the smell through his breath, skin, fluids. Hopefully the smell will subside by tomorrow.
The transplant was uneventful and observed by the attending doctor, the fellow, and the resident. The nurse performed it. How backwards is that? It all went smoothly with no immediate allergic reactions. The doctor said if we were to look inside all his bones right now, it would be hollow with no existing bone marrow. Crazy! So now it's a waiting game for mouth sores, fevers, transfusions, and hair loss. What fun! What fun!
Here's a brief video of the transplant process. I unfortunately missed a shot of the 3 doctors just standing at the foot of his bed watching the whole thing take place. The smell was pretty immediate and he plugged his nose and watched cartoons through the whole thing.
He's been in reasonably good spirits today, but his appetite is waning. He didn't eat anything until 7pm. He managed a small bowl of Cheerios, a few bites of fruit, and a bag of movie theater buttered popcorn. Only a mom would keep track of such things, right? His other mood booster was finally getting the video chatting up and running. He and James (best friend) talked for an hour. I guess I should clarify that they weren't chatting the whole time. There was plenty of silence too, but they're not old enough for awkward pauses. They were texting each other! How cool is it to be texting each other while watching each other do it on a computer screen? Oh my. (deep pathetic sigh). So Lisa (his mom) and I called each other on our phones, waved over Skype and contemplated emailing and texting just to one up the boys. We didn't. But it was discussed.
Sunday, January 30, 2011
He's been doing quite well this week, but the chemo is catching up with him. His appetite is decreasing and so is his weight. He's lost 2-3 lbs. already. Ryan and I keep reminding ourselves that we knew this was part of the process. The doctors told us he would be on I.V. nutrition for a period of time---not maybe, but definitely. So we'll keep ordering food and offering encouragement.
Ryan replaced me at the hospital on Friday to provide some fresh entertainment over the weekend. The boys were happy so see me, but perhaps more disappointed to see cousin Eliza go home. It's amazing how the novelty of a little girl in our house keeps those boys entertained. I'm bracing for those teenage years! Thanks, Mary, for holding down the fort and thanks, Erik, for letting your wife and daughter place house at our house! It's really good to be with the boys and hide from the world in the security and freedom of our home. We've eaten a lot of popcorn and enjoyed being together.
I'll likely head back to San Francisco late tonight so Ryan and I can be together with William during the transplant. Transplant is Monday at 11AM. As I understand it, it's quite underwhelming. It's an infusion. No alarms, no firecrackers, no anxious gasps for breath. A small bag of pinkish fluid simply passes through a tube into his chest over about 30 minutes. It occurs in his room and we will be with him, but a nurse will be stationed at his bedside for a period of time closely monitoring things. More on that tomorrow. (You know, after I'm an expert!)
We continue to take one day at a time and want to express enormous buckets of gratitude to all of you that continue to support us in so many ways. We feel your prayers. We physically feel your prayers.
Friday, January 28, 2011
Thursday, January 27, 2011
Look at the hair, eyebrows, and eyelashes---I love it! And it is soooo soft. And surprisingly, a little darker. But, he'll loose it all next week. I wonder how it will grow back in a few months?
Physically, William is doing great. He continues to eat and get up and move around the room. Emotionally, it's been a tough day. He's been quite homesick. He sobs about wanting to go home, getting out of the room, hating hospitials, etc. Part of the meltdowns and mood swings appear to be tied to one of his medications; he gets hyper and silly and then 2 or three hours later, he starts crying. It's no fun because I don't have much to say to make it better. "I know, but you have 4 days down and only about 25 days to go." I wait for him to finish venting and in the end, through his sobs, he asks me me to just hold him. I do. And I stroke his soft head with my cheek.
He loved video chatting with his East Coast cousins today. The whole EST vs. PST is usually tricky in finding mutually convenient times to chat, but today it was perfect. His meltdown coincided with east coast bedtime. Thanks, Sam, Lauren, and John for cheering up William. (Thanks, Danny and Sarah too, for prolonging your bedtime rituals! I know that can be a sacrifice.)
Ryan is arriving tomorrow to take his weekend shift. Yay! He'll come bearing chocolate. Oh, how did I forget that one?
Wednesday, January 26, 2011
Preparing to come to the hospital:
- wash all clothes
- seal all items in plastic bags (Ziploc), i.e. clothes, pillows, stuffed animals in
- no toothbrush or opened toiletries
- scrub for 2 minutes up to our elbows in the ante room (enclosed entryway with a sink and storage cupboards)
- William given a sterile bath. Think sponge bath, but with heated, sterilized, bottled water and special antiseptic soap.
- Put on clean, sanitized clothing from home.
- Everything we brought had to be wiped down with sanitizing wipes before entering the room. The wipes are so powerful that rubber gloves must be donned.
- William may not leave the room.
- Hands must be washed every time upon entering the room.
- 2 minute scrub to elbows only if you go outside the hospital.
- Only William can eat and drink in the room. I have to stand in the ante room to eat or drink. This puts a cramp in any snacking urges. And the outside door is a glass door that looks right at the nurses station.
- No outside food permitted in the room, i.e. restaurant, homemade.
- Any food not prepared in the hospital must be individually wrapped and sealed.
- Once the seal is broken, it must be consumed in 2 hours or thrown away.
- William's food is prepared in a special neutropenic kitchen.
- William is given a sterile bath each day.
- He he must swish three times back to back, 4 times a day with a special solution to clean his mouth.
- Brush his teeth daily with the disposable sponge on a stick toothbrushes.
- Bed linens are changed daily. The linens for the BMT kids are washed and stored differently to make sure they are very, very clean.
- No toilet paper is used. Sterile gauze pads may be dipped in sterile water and/or sterile soap solution if needed.
- Only William may use his bathroom.
- The shower may not be turned on since the pipes in the hospital are old.
- Only bottled water is consumed.
William is on day 2 of chemo. He is receiving Busulfan for 5 days and then Melphalan for 1 day. Then 24 hours after that . . . Transplant (Monday). So far he is tolerating it quite well and continues to eat. The doctors told me this morning that side effects can be slightly delayed, but it's a good sign he's still eating. We are told the Melphalan won't be so pleasant. William is pre-medicated before the Busulfan with Ativan for nausea and possible seizures. It makes him a bit loopy and dizzy, but in an entertaining way. Yesterday he asked why I had two heads. He laughed. That's good.
Soon to come: pictures and perhaps a video tour.
Monday, January 24, 2011
I'll start with the best news of the day.
MIBG SCAN results: clear! No uptake in the liver, pelvic bone, or resection site (tumor site). This means there are no active neuroblastoma cells in his body other than the small amount of stubborn cells in his left leg.
We are thrilled with this news as it means the MIGB therapy, the lead-lined room, isolation, and temporary cramped lifestyle were all worth it. He is one of the 1/3 that benefit from that treatment! Finally, one of the odds that went in our favor! (Deep sigh of relief)
Today was filled with instructions on how to sterilize and sanitize everything that comes into the room and how we live our lives in an environment like this. It's a mental overload right now because today has been full of bundles of new information. But it's all good and we're already settling into a routine.
William is in good spirits and describes today as "Easy. I just stood there and got bathed and then just played my DS while people did stuff." Okay. Tomorrow may be a different story when chemo starts and he may not be feeling too good. We'll see.
I'm off to bed because I'm tired and because I actually have a real bed with a mattress and it doesn't fold up or out. Ahhhhhh. The simple pleasures. More tomorrow on our lifestyle. I promise.
Saturday, January 22, 2011
Bone Marrow Biopsy and Aspirate
- Right leg continues to be clear of any disease.
- Left leg still has measurable disease at <3%. This is an improvement from the <5% before the MIBG therapy in December. Of course, we are saddened by this result as we had hoped for remission before proceeding to transplant. This result means there is a slightly higher chance his cancer could return or not be cured at all. But looking at the bigger picture, his bone marrow was 95% infected at diagnosis. He's made lots of progress! William has undergone the most aggressive forms of treatment available for neuroblastoma. We have no regrets as to the course of his treatment. This is just the way his body and the cancer have responded.
- Continues to have increased mild hearing loss in the high pitch range.
- He is still within the range of normal speech development. Thankfully, the new chemo regimen he will undergo before transplant does not have the toxicity to hearing that the former regimen has.
- This will keep him out of military service!
- Some parts were normal. Others were not.
- Some of his flows were measured at 50%. This is not too concerning given his age, what chemo he has tolerated, how he may have felt that day, inexperience with the test, but it is acceptable to proceed with transplant and will be monitored long term.
- Decreased number and size of the previously noted lesions in the liver.
- The largest has decreased in size from 1.4 cm to 1 cm.
- results still pending.
Ryan and I met with one of the transplant doctors to discuss at length the transplant process and the risks involved. It went well and we feel at peace, but it's very sobering when you must participate in a discussion about the realities of your child's health. There are risks and although many things are rare, they still happen at frequencies we wish didn't exist.
We've got a busy weekend getting everything prepared and spending some quality time with the boys. I'll post more details later of all the precautions and restrictions that go along with t he transplant.
Tuesday, January 18, 2011
As I mentioned in a previous post, this week is full of tests and scans. Monday afternoon, we got a call from a nuclear medicine tech telling us they could not inject William with the MIBG on Tuesday (today) for his scheduled scan on Wednesday (tomorrow) because he had been injected with such a high dose in December. They wanted to do a background scan to assess his radiation levels before injection. Fine. I can live with that, but after the scan he can receive the injection, right? No. After the preliminary scan, the nuclear medicine doctor decided she didn't want to do the scan and wanted to wait a week. Panic hit as I tried to explain that we didn't have a week because he is scheduled for hospital admittance to begin the transplant process on Monday! This Monday! After some frustration, (I'm obviously leaving out some of the details that don't matter now), and several phone calls, S.F. got us into their schedule and will do the injection and scan, but it means I have to drive William to S.F. on Thursday for an injection (we're talking minutes to inject) and then return home and then back again the next day, (Friday) for our consent conference and his MIBG scan. But of course his scan is scheduled during our conference. Thankfully, my amazing family will come to the rescue and my brother, who works in S.F., will take off work to take William to his scan and be with him while we are in our meeting.
So now I'm in the process of reassessing the babysitting needs and double checking it all. I owe enormous Thank Yous to fabulous and supportive family and friends for so often being willing to care for my other children at usually very short notice. Thank you! Thank you! Thank you!
At this point, it appears his transplant will not be delayed, but it really took villages today to help me keep some semblance of sanity and iron out the wrinkles.
Oh, and did I mention I got a parking ticket too because in my stress I hung my recently expired handicap placard instead of my valid renewed one? Well, I did.
Friday, January 14, 2011
This morning we left the house quite early to head to San Francisco for a blood draw for labs that are needed in preparation for transplant. It was a long drive for such a quick thing, but it had to be done in the SF lab. Luckily, I was able to talk with one of the transplant doctors for a while to answer more questions. The doctor examined William and noticed his heart beating a little fast and that he looked a bit pale (I think William is always a bit pale), so our plans changed a bit. We were planning on a Tuesday blood transfusion, but since the weekend was long, his blood levels were already borderline, and he had a lot of blood drawn today for labs, the doctor wanted a transfusion today. So I called our hospital in Sacramento and arranged to come in straight from San Francisco for blood. Oh, the life. But at least on Tuesday we will have one less thing to do at the hospital. And hopefully we can make it home within 13 hours from when we left home this morning.
Yesterday was the kickoff to our week or so of transplant prep actvities. For starters, William had another bone marrow biopsy and aspirate to test for any remaining cancer cells in the bone marrow. We anxiously await the results on Tuesday. (Darn 3 day weekend). It went smoothly and William was thrilled with Child Life's new acquisition: an Ipad! And they even loaded Angry Birds in HD just for him! We make each biopsy "fun" by video taping how long it takes the Propofol to kick in. William plays Angry Birds and tries to see how many birds can be launched from the time the injection begins until he's out. It's usually 1-2 birds.
Here's the rundown of the remaining fun activities: PFT (pulmonary function test), MIGB injection, audiogram, EKG, ECHO, MIBG scan, CT scan, 2 clinic visits, and as afternoon trip to SF for me and Ryan for the consent conference where we hear all the risks in detail and sign all the papers for transplant. Then we have the weekend at home, (exhale), before heading back to SF on Monday the 24th to begin our month long (hopefully not longer) hospital party, (inhale and hold it).
Wednesday, January 12, 2011
Monday, January 10, 2011
President Uchtdorf states, “If life and its rushed pace and many stresses have made it difficult for you to feel like rejoicing, then perhaps now is a good time to refocus on what matters most.” He continues by outlining the importance of improving four key relationships.
1) Our relationship with our Heavenly Father. “As we seek Him, as we learn of His Son, Jesus Christ, as we open our hearts to the influence of the Holy Spirit, our lives become more stable and secure."
2) Our relationship with our families. “In family relationships love is really spelled t-i-m-e, time. Taking time for each other is the key for harmony at home."
3) Our relationship with our fellowman. “We build this relationship one person at a time—by being sensitive to the needs of others, serving them, and giving of our time and talents.”4) Our relationship with ourselves. He suggests we "… reduce the rush and take a little extra time to get to know [ourselves] better. Walk in nature, watch a sunrise, enjoy God’s creations, ponder the truths of the restored gospel, and find out what they mean for [us] personally. Learn to see [ourselves] as Heavenly Father sees [us]—as His precious daughter or son with divine potential.”
With the extra time (out of the hospital) we've had lately, we have really tried hard to spend quality time with one another. We've also tried to make much of the time one-on-one with each of the boys whenever possible (not an easy task, but doable with a little effort).
William will be admitted to UCSF on Monday, January 24th, to begin the stem cell transplant process. Details on the process to come later. After the transplant, he will not be allowed in public places for 3-6 months. Therefore, we are trying to enjoy things with William that may be off the table for a while in the near future, like eating inside In-'N-Out (he's finishing a whole Double Double these days), having playdates, going to the movie theater, riding bikes, and Kings games.
For those that don't follow the NBA (I don't), the Sacramento Kings are the worst team in the league this year. Ryan was offered 4 free tickets from a coworker to attend a game that evening. (Thanks, Neil--you made 2 boys really, really, happy! Okay, two moms too!) Ryan perfected his babysitting skills while Lisa, James, William, and I headed off to the game with low expectations for the game, but high expectations for some good 'ole fun. It was fantastic! William ate a Jumbo "King Dog" and "King" rootbeer, and half a Jumbo popcorn. Can you tell what I focused on during the game? The caloric intake was worth every penny I shelled out! He and James danced, cheered, and tried unsuccessfully to get on T.V. William managed to work his bald head by dancing in the aisle during a commercial break until one of the dancers ran up the stairs and personally handed him a King's t-shirt. That made up for not getting on T.V. Oh, and the Kings had their best game of the season, winning and scoring a record high in points for the season.
I hope he doesn't burn too many calories. Check out the face!
So here's to finding moments to rejoice in, like just being with good friends in public places.
Monday, January 3, 2011
But on the bright side, we got to visit with our two good buddies, Spencer and William (both were just in for regular check-ups and not admits-yay!); we got to see some of our favorite nurses; we got to spend some time in the playroom; and we remembered why we loved our break from the hospital so much! We missed the friends, but not the lifestyle!