Monday, July 25, 2011

We're Coming Out!

William is officially out of isolation! Well, as officially as his parents deeming the isolation period over. Next Sunday is the official 6 month mark from transplant, but since he is doing so well, we decided we are done. Don't worry. We're not doing anything crazy or careless, like licking shopping carts or sharing popsicles. We're just enjoying the company of large public places that may or may not have roofs. I still carry 3-4 pocket hand sanitizers in my purse, a large one in my car, and several placed strategically around the house and frequent hand washing will probably always be a way of life, at least for me because we know little boys will not do that on their own! But we are once again enjoying places outside our home with our whole family! (Big smile and sigh of relief.)

The final lab results checking the actual function of his immune system won't be drawn for one more week and the results won't be back for another couple weeks after that. We'll let you all know the findings.

We had a glorious weekend all together. We spent Saturday afternoon on the lake with kayaks. We had ours and borrowed a friend's and we all piled in. It was a gorgeous afternoon with lots of kayaks and canoes on the lake. We stopped several times and picked lots of wild blackberries and later made homemade ice cream. Ryan even taught the boys to cliff jump, much to my dismay. However, the "cliff" was about 2-3 feet high and they jumped to Ryan's arms. William still can't swim since his broviac is still in, but he wasn't missing the swimming this time as his brothers were gasping from the frigid temperature of the water.

Saturday night we celebrated Pioneer Day. For those of you not living in Utah (where it is a state holiday) or unfamiliar with the history of the Mormon Pioneers, July 24, 1847, is the day Brigham Young and the first pioneers reached the Salt Lake valley. Each year at this time, members of the Church of Jesus Christ of Latter-day Saints all over the world celebrate this day. We spent a fun evening in El Dorado Hills with all the local LDS congregations. There was a BBQ, bounce house, face painting, pioneer games, waterslide, snow cones, and a band. It was so fun to be as a whole family and when people asked us how William was doing, we were able to say "He's here!" and often point to where he was. William complained that his legs were sore from running around. That makes me happy.

Sunday was wonderful to all attend church as a family. And it was really nice to have 2 adults to keep the boys in line! William enjoyed seeing many of his friends again and showing off his just-barely-long-enough-to-comb hair. He's counting down the days until school starts and even has his clothes picked out for the day. Recently, he has commented several times that he wished the summer was over so school would start. Perhaps I need to record that one on camera!

Today William began his low dose IL-2 infusion. We spent a very long time at the clinic getting some labs test kinks worked out and then due to a shortage of home health nurses, finally got the infusion started around 8pm---at HOME. Despite the mild frustration from all the waiting and delays today, it is all better than being in the hospital. Normally this infusion is started under 24 hour observation in the hospital. However, William previously tolerated the low dose infusion just fine so the doctor cleared us to remain at home pending all other insurance approvals and various hurdles cleared. He'll complete the infusion on Friday night and we are hoping he keeps the typical fever side effect at bay so we don't wind up at the hospital for a late night antibiotic infusion. Then on Monday, Aug. 1st, William and I check back into UCSF for the 5 days of antibody therapy. This will complete round 4 of 5.

Wednesday, July 20, 2011

Fudging the Line for Summer Fun

Is there really a line? Perhaps, but it seems harder to see these days. This whole isolation thing is getting old. The only precaution we really seem to obey is avoiding enclosed spaces with lots of people. But we kind of cheated that one by going to IHOP one night for dinner. We justified it because we were the only ones there. And we did sneak William in for sacrament meeting on Sunday (1st hour), but we sat in an adjacent room by ourselves where it was wired for sound.
So William and I are still waiting anxiously to hit the theater for Harry Potter 7 Part 2. I suppose the longer we wait, the smaller the crowds.

The line is also getting fuzzy because this past week has seen the return of a William we haven't seen in 15 months. He's been very active, borderline hyper at times. We took the family to a Rivercats baseball game (minor league team feeding the Oakland A's) last Thursday since we couldn't see the H.P. premier. Sigh. Ryan was given 4 tickets from a co-worker at the last minute (he was going to H.P). We decided to all go and buy 3 more tickets to sit on the lawn. Besides, the weather was so cool all week, it seemed sinful to wait a few weeks so we could enjoy a game in 102 degree heat! William was so sad at first and when we told him he was coming too, he almost didn't believe us. He is so used to being left out or left behind. William, Soren and I took the lawn seats (away from the crowds) and Ryan and the other boys sat in the "good" seats (in the crowd). By the end of the game, William was on cloud nine and the other boys were whining about not getting to sit on the grass. William made it onto the jumbo tron 4 times for his dancing! He just couldn't stop dancing around each time the music played!

Let's hear it for the cheap seats!
July 4th Giants Game
(cheap seats get quite the view!)

Dinner with William after the game!

William misses swimming. William really misses swimming! There's not much I can do to justify him taking a little dip with his Broviac because it's not worth the risk of winding back up in the hospital. This is how we protect his line from water: Aquaguard. For the bath or shower, we usually use two large Tegaderms, but I'm hoarding those right now and I have to do a dressing change after using those because they stick to his dressings.
To fudge the swimming line, I found a website gem in the FamilyFun magazine while sitting in the dentist's office. Mine lacks the artistic touches from the creative genius in the magazine, but my boys wouldn't fully appreciate the time and effort to go that far. Nor do I have the patience. Here's what resulted: Kid Wash!

Sunday, July 10, 2011

A Little More Isolation

Today I need to repent. No need to squirm in your seats. Sorry, folks, it's not that juicy.

As I sat in church today, knowing I haven't blogged all week, I felt a little guilty. Let me explain. I'm over the guilt of going to bed over blogging or spending more time with my family over blogging, or even indulging in a late night bowl of ice cream over blogging. I know I've mentioned in the past when there are gaps in the time frame of posts, things are good and there is nothing significant to report. I need to repent of that statement. Today I realized those are the times I need to express gratitude for blessings because it is during the times of peace that I am reaping blessings.

William's treatment this past week was amazing! Did I really just describe a crummy cancer treatment as amazing? Yikes. But it really was amazing. William was pleasant and comfortable and active. Yes, active. He actually anxiously got out of bed to go to the school room and All-Stars Room (technology room). Okay, so he went to the school room once and the All-Stars room every day. But that is a huge feat for him. He even asked to take a walk down the hall one night around 10 pm. Weird. It was a funny site to see him jump out of bed and start unplugging his IV pole and disconnecting his heart rate and oxygen saturation monitor. A few times I had to remind him he needed to ask the nurse first. But we all loved seeing him that way. One nurse said, "I've never seen him this way. It's great how he seems so normal. We don't get to see that very often." We are truly grateful for the good days, the miracle drug, Neurontin, the Ipads in the All-Star room, Cocoa Puffs and whole milk on the kids menu, attentive nurses and doctors, fogless nights in SF and a room with a view of fireworks, Jamba Juice, EMLA cream (numbs for shots), sisters who babysit, family and friends who pray for us, and a loving Heavenly Father who reminds us daily we are loved.

William's pain was very well managed this time around. He only complained of discomfort on the last night of the infusion. He probably wasn't even paying attention because he didn't realize it until right after he finished Skyping with James. Oh, the value of a good distraction! After a bolus of pain meds from the nurse and pushing his PCA button twice, he was fine. He had no fevers and his blood pressure, when it got low, remained close to the guideline parameters and usually a little movement and waking up did the trick. Whew.

The only significant complication didn't have anything to do with his treatment. His broviac, central line in his chest used for infusions and blood draws, has been acting rather finicky the past few months, making it difficult to draw blood. We often have to make William try myriads of different positions: hands up, head turned left, head turned right, lean over, lean back, lean sideways, stand, sit, jump. One time, while drawing labs at home, Ryan actually held him over his shoulder and we tried to make him upset. I know, that sounds awful, but if the problem is due to his blood pressure, being upset seems to increase the blood flow through his veins. It actually worked that time. We've had some occasional success with trying to keep him well hydrated, but that has also proven not to be a guarantee. Clotting does not seem to be the issue since it flushes successfully. A possible culprit is the tip where the flap-type mechanism is located inside his vein gets lodged against the wall, in the tissue of the vein where the blood isn't flowing as freely. Some of his labs have been inaccurate because the quality of the blood sample is not great. The last day in the hospital, we finally resorted to poking him in the arm the old-fashioned way to get accurate labs. William wasn't a fan, but he's done a lot of tough things and he gets shots like a champ. Hopefully his comfort level with this method of blood draws will improve. The alternative, like removing the broviac and replacing it with a PICC line in his arm for the remaining few months, seems more traumatic than the inconvenience of occasional pokes.

Labs were also drawn for the progress of his bone marrow transplant. As I think I mentioned in the previous post, the result from the first set of labs would determine whether the function test would be done and if the isolation precautions could end. His labs looked fantastic and William's numbers were actually higher than the doctor had expected and he's ready for the function test. Yay! Unfortunately, the doctor became concerned that the antibody infusion may skew the function test labs and it is a very expensive test. Also, when we had talked previously, he admitted he read the dates wrong when thinking we could end the isolation pending good numbers with the first test. He read the bone marrow harvest date (Aug 1) instead of the transplant date (Jan 31). Boo! Since William hasn't met the 6 month mark yet, regardless of the great initial labs, he asked that we endure the last 3 weeks of isolation before the function test and the end of isolation. Rats.

While sharing the news with Lisa, she offered encouragement (because she knows I was trying to justify ignoring the doctor's request). She compared this to the last 3 weeks of pregnancy. They are often the hardest weeks, but in the grand scheme of things, they fly by. Perhaps she's right, but I reminded her that all my babies were 2+ weeks early!

Next item of business:

How long is William's hair?

Long enough to make a faux-hawk!

Monday, July 4, 2011

Happy Birthday, America!

In honor of the 4th, we all made a valiant effort to wear red, white, and blue. (But several of the boys mixed it up with Giants gear). I wore my Cons. I only do this a few times a year. I also made my first venture into the world of skinny jeans. I paired them with the Converse and William said, looking confused, "You look too young!" Clark commented, "You look cool, Mom. You look just like a teenager." I'm still trying to figure out how I feel about these comments. Perhaps I need to just stick with my fashion safety motto which tells me if I wore certain styles the first time around, I'm too old to wear them the second time they become fashionable!

Last night we had a fun "court/neighborhood" soiree with fireworks and ice cream sundaes. We have fantastic neighbors who were willing to shoot off fireworks a day early with us since William is in the hospital today. The boys loved it and couldn't believe how late they got to stay up! And I overheard Clark excitedly asking, "This is playing with fire, right?" Oh, how he makes me nervous for his teenage years! I'd post pictures, but the camera is with Ryan. Read on.

This morning we packed up two cars and headed to the city. William and I headed to UCSF and Ryan and the boys headed to Chinatown, trolley rides, and a Giants baseball game. It's a fun day for most. Otherwise, this begins round 3 of 5 for the antibody therapy. Hopefully this one is reasonably uneventful and the pain is well managed like last time. And we hope to catch a glimpse from our window of the fireworks at Fisherman's Wharf.

William is approaching his 6 month isolation mark, July 31, and we are getting anxious. He's actually closer to the 5 month mark than 6 month mark, but our recent beach vacation really has us craving the completion of his isolation. So I called the BMT office this past week to let them know we would be in SF this whole week and asked if it would be possible to do the blood work now to save me an additional trip to SF. Can you believe I'm trying to avoid a trip to SF? I also mentioned we'd be back at the end of the month too, but I mentioned it more as a fall back plan. After discussion with the parties involved, they agreed to do the preliminary test and if the number is high enough, CD4 >200 (it was 94 at 3 months), they will proceed with the function test. The function test identifies not only if the B and T cells have recovered in numbers, but if they are functioning properly too. The blood was drawn this afternoon and we'll have results tomorrow. If the CD4 is >200, all isolation precautions will likely be lifted, even before the function results are in. We feel like the horse nearing the stable; we can smell the finish and we know how the road is supposed to look from here, but we still have to pass required landmarks. Clip, Clop, Clip, Clop!

Ryan and I also celebrated our 12th wedding anniversary this past week. Last year we ate take out together on a grimy picnic table in front of the hospital. This year we did the happy dance we weren't in the hospital, (although I did take William to the clinic and the rest of the boys to the dentist that day) and then we headed to they gym where we put the kids in child care and after a treadmill workout, relaxed in the hot tub, sans children! Sometimes it's nice to just celebrate things by slowing down the pace.

Happy 4th! May your day be filled with good food, good company, some sparkly lights, and the freedom to enjoy it all!