A Day of Paperwork

Travis and I arrived at the NIH Clinical Center shortly before 8:00a and walked out the doors at 4:30p. We spent most of the day with paperwork and routine exams in addition to the usual waiting. Since we're not staying at the Children's Inn property, we're in an overflow area while they are remodeling, we decided to eat breakfast at the NIH Clinical Center and skip the step of finding something to eat at the Children's Inn. We found a cafeteria and ate yummy pancakes for breakfast. To describe the NIH Clinical Center as huge would be an understatement, yet it is well marked for where we needed to go.

T checking out the NIH Clinical Center model

Registration / Admission took the longest of all the steps today, we left that area 2 hours after we entered at 8:30a. I heard the wait was long when we signed in and fortunately T played on the iPad and I read to pass the time until we were called back. Travis charmed the admissions lady and she enjoyed having him in there as we went over paperwork (address, doctor info, etc).

From there we made our way to the Peds Clinic where most of our appointments occurred the rest of today. We met with Wendy, the nurse that helps with the Peg-intereferon trial, to sign the consent all patients at the NIH sign. This basically allows the NIH to do any blood work, x-rays, labs, scans, etc needed to conduct the trial or research study. Most of the items on this form do not relate to Travis, but the NIH uses the same form for all.

After I signed the consent, another nurse performed Travis' vital signs and thus began basically an office visit. T went back to the games in the waiting area and made a new friend (another kid who we later learned at the Children's Inn also has NF1) playing video games. Kim, I think that is her name, came to get Travis as it was time for a "poke". T chatted with her about all kinds of things, diversion from what he knew was next. She understood and made the process easier by letting T scan his barcode, help where he could, and even let T send the tubes through the tunnel to the lab. :) They both made friends today.

T playing a racing game

We headed back to the waiting/play area until it the time arrived for Dr. Widemann and Dr. Jackson to examine Travis. Dr. Afify (oncologist in SLC) sent detailed notes to the NIH doctors, so we discussed T's NF history fairly quickly and they both examined Travis. When the doctors checked T's reflexes/movement of his feet, they realized how much T likes cars (if it wasn't already apparent when he was racing cars) when we used the reference of pressing a gas pedal and lifting your foot of the pedal to have T move his foot how they wanted. ;) Travis charmed them with his usual self...really, they had no chance. ;)

T getting examined with Dr Widemann watching, she already looked at T.

Travis and I found a place that had pastries after the exams; however, no donuts. Never fear...Travis decided the double chocolate cupcake with chocolate sprinkles made a good substitution. We found another cafeteria in the building and ate lunch, plus the "donut substitute".

The donut substitute

Travis wanted to go back to the waiting room area to play/race before we met with Dr. Widemann to review the Peg-interferon consent. We checked off the final lab to hand in, Travis didn't need to "go" when he did the blood draw. After the nurse prepared the sample for travel to the lab, Travis sent that off to the lab as well. We decided to go have our NIH badges made since the consent meeting would occur a little later than 2:30p, they told us this earlier today. Travis likes having his ID on a lanyard and not a clip, plus his has his barcode on the back.

The time came to review the consent for the Peg-interferon trial with Dr. Widemann and Wendy. Fortunately they sent us an electronic copy earlier in the month to we could review the document at our convenience before today. We already asked questions before we left and only had a few more questions today. They discussed each side effect listed in the paperwork and commented on the ones the NF patients experienced, the paperwork lists all known side effects of the drug. Travis sat at the table during this meeting, usually playing iPad, and he didn't have any further questions. I think he hears and understands to a certain degree what we discuss during T's appointments even while playing. I signed the consent and Travis and I walked out of the NIH Clinical Center at 4:30p.

We walked to the Children's Inn to get a tour of their facility, too late the night before, and see what their menu listed for dinner. Travis loved the game and play rooms, and after the tour we played air hockey, pool, ping pong, indoor playground with the volunteers, Wii, etc. Tonight's dinner celebrated Dr. Seuss' upcoming birthday and we ate pancakes for dinner, T chose the regular ones over the green ones. After dinner we went back to the play room for Dr. Seuss crafts. Travis made a "Cat in the Hat" hat and his own bookmark. He also played rhyming word hide-and-seek and matching, plus pin the hat on the "Cat in the Hat".

T in his hat

While at the party, the mother of the child that Travis played with at the waiting/play area and I started talking. Turns out her son also has NF1 and he took Peg-interferon for 4 years until it stopped working for him. She spoke highly of Peg-interferon and positively about her son's experience while on the medicine, even discussing the side effects her son experienced. I know God placed things today where our paths would cross, I'm so incredibly thankful for Him. Her son may begin a different clinical trial and he may start that medicine later this week (MEK inhibitor end of phase I, we are looking to MEK inhibitor phase II to open maybe as early as May/June).

Tomorrow Travis starts Peg-interferon, a medicine he describes will "spank my tumor". Thank you for all the prayers as he has his first injection around 11:00a EST. The nurses will teach me how to give the injections before his first shot. Most patients felt the worst after the first injection, each week after was better. Prayers for the rest of the day and for Scott, Nolan, and Barrett in Salt Lake City. We know God has this and He has all along.