Beads Of Courage

BEADS OF COURAGE  - Riley Heflin

       Name
       UMC
1. Poke (black)
2. Poke (black)
3. Poke (black)
4. Diagnosis
5. Tests & scans (fish)
6. X-rays (x)
7. Platelet transfusion (red)
8. Night stay (yellow)  Dec. 13, 2011
9. Platelet transfusion (red)
10. Echo -before chemo starts (light green)
11. Odd occurrence
12. Allergy to platelets (pink)
13. Surgery  (star)
14. Line placement
15. Port (orange)
16. Lumbar puncture (tortoise)
17. Chemo – intrathecal (in spinal fluid) (white)
18. Bone Marrow Aspirate (beige)
19. Poke (black)
20. Night stay (yellow) Dec. 14, 2011
21. Neutropenia (lime)
22. Dressing change (gray)
23. Chemotherapy (white)
24. Night stay  Dec. 15, 2011
25. Neutropenia (lime)
26. Dressing change
27. Chemo (white)
28. Night stay
29. Neutropenia
30. Chemo
31. Night stay
32. Chemo
33. Neutropenia
34. Night stay
35. Neutropenia
36. Dressing change
37. Dressing change
38. Chemo
39. Transfusion – red blood cells
40. Transfusion – red blood cells
41. Night stay
42. Neutropenia
43. Chemo
44. Night stay
45. Neutropenia
46. Re-access – poke (black)
47. Dressing change (gray)
48. Dressing change (gray)
49. Chemo (white)
50. Night stay (yellow)
51. Neutropenia (lime)
52. Chemo (white)
53. Transfusion – platelets  (red)
54. Dressing change
55. Night stay
56. Neutropenia
57. Chemo
58. Night stay
59. Neutropenia
60. Chemo
61. Night stay
62. Neutropenia
63. Christmas
64. Transfusion – red blood cells
65. Transfusion – red blood cells
66. Night stay  Dec. 25, 2011
67. Neutropenia
68. Dressing change
69. Night stay
70. Neutropenia
71. Transfusion – platelets
72. Night stay
73. Re-access – poke
74. Dressing change
75. Neutropenia
76. ANC 0
77. Hair loss – Dec. 28, 2011
78. Night stay
79. Neutropenia (lime)
80. Dressing change (gray)
81. Transfusion – red blood cells
82. Transfusion – red blood cells
83. Fever 104 degrees – hard day
84. Antibiotic (purple)
85. Antibiotic (purple)
86. Night stay
87. Neutropenia
88. Transfusion (platelets)
89. Night stay
90. Neutropenia
91. Night stay – Dec. 31, 2011
92. December bead
93. New years 2012 (yellow/red clear)
94. Neutropenia
95. Night stay
96. Neutropenia
97. Fever – hard day
98. Night stay
99. Neutropenia
100. “100 bead”
101. Transfusion – platelets
102. Match Day!!  Jan. 3, 2012 Preston & Bryant!
103. Poke – tests
104. Night stay – Jan. 3, 2012
105. Neutropenia
106. Re-access – poke
107. Dressing change
108. Night stay
109. Neutropenia
110. Night stay
111. Neutropenia
112. Transfusion (red blood cells)
113. Transfusion (red blood cells)
114. Night stay
115. Neutropenia
116. Weird reaction to Marinol  Sat. Jan. 7, 2012
117. Night stay
118. Neutropenia
119. Horrible nausea (small bumpy)
120. Night stay
121. Neutropenia
122. Night stay
123. Neutropenia
124. Night stay
125. Neutropenia  Jan. 11, 2012
126. Transfusion (platelets)
127. Lumbar puncture
128. Chemo –intrathecal  (white)
129. Bone Marrow Aspirate / biopsy
130. Re-access – poke
131. Dressing change
132. Night stay
133. Neutropenia
134. Horrible nausea (small bumpy)
135. Night stay
136. Neutropenia
137. Chemo (start 2nd round - 8 days)
138. Night stay
139. Neutropenia
140. Transfusion (red blood cells)
141. Transfusion (red blood cells)
142. Chemo
143. Night stay
144. Neutropenia
145. Chemo
146. Night stay
147. Neutropenia
148. Chemo
149. Night stay
150. Neutropenia
151. Chemo
152. Night stay
153. Neutropenia
154. Chemo
155. Re-access – poke
156. Dressing change
157. Night stay
158. Neutropenia
159. Chemo
160. Night stay
161. Neutropenia
162. Chemo
163. Night stay
164. Neutropenia
165. Night stay
166. Neutropenia
167. Transfusion (platelet)  Jan. 22, 2012
168. Odd occurrence
169. Allergy- reaction to platelets (pink)
170. Night stay
171. Neutropenia
172. Night stay
173. Neutropenia
174. Transfusion – red blood cells  (red)
175. Transfusion – red blood cells  (red)
176. Night stay
177. Neutropenia  Jan. 25, 2012
178. Fever
179. Antibiotics (purple)
180. Antibiotics (purple)
181. Re-access – poke  (black)
182. Dressing change (gray)
183. Transfusion – red blood cells
184. Night stay
185. Neutropenia
186. Transfusion – platelets (red)
187. Night stay
188. Neutropenia  Jan. 27, 2012
189. Transfusion – red blood cells
190. Night stay
191. Neutropenia  Jan. 28, 2012
192. Poke – shivers so needed IV for tests
193. Poke (took 3 pokes to get IV in)
194. Poke
195. Scan (3 scans looking for infections)
196. Scan
197. Scan
198. Night stay
199. Neutropenia
200. “200 bead”
201. Night stay
202. Neutropenia  Jan. 30, 2012
203. Transfusion – red blood cells
204. Transfusion – red blood cells
205. Strength bead – hard week (Acorn)
206. Transfusion – red blood cells
207. Night stay
208. Neutropenia
209. Night stay
210. January bead
211. Neutropenia
212. Night stay
213. Neutropenia
214. Night stay
215. Neutropenia  Feb. 3, 2012
216. “Happy Birthday!”
217. Night stay
218. Neutropenia
219. Night stay
220. Neutropenia
221. Night stay
222. Neutropenia
223. Going home!!  Feb. 6, 2012
224. Clinic visit  Feb. 2012
225. Re-access
226. Lumbar puncture
227. Chemo – intrathecal
228. Bone Marrow Aspirate / biopsy
229. Remission !!! Wow!
230. Re-access port – poke (black)
231. Chemo (high dose) start 3rd round  2/13/12
232. Night stay
233. Chemo
234. Night stay
235. Chemo
236. Night stay
237. Chemo
238. Night stay
239. Fever
240. Fever
241. Chemo
242. Dressing change
243. Night stay
244. Night stay
245. Night stay
246. Neutropenia
247. Re-access port
248. Dressing change
249. Night stay
250. Neutropenia
251. Transfusion – red blood cells
252. Transfusion – red blood cells
253. Night stay
254. Neutropenia
255. Night stay
256. Neutropenia
257. Night stay
258. Neutropenia
259. Transfusion – platelets
260. Dressing change
261. Night stay
262. Neutropenia
263. Night stay
264. Neutropenia
265. Transfusion – red blood cells  Feb. 27, 2012
266. Transfusion – red blood cells
267. Re-access  port
268. Dressing change
269. X-ray (for stomach pain)
270. Very difficult night!!  Stomach pain.  Anchor
271. Night stay
272. Fever  Feb. 28, 2012
273. Antibiotics (purple bead)
274. Antibiotics (purple bead)
275. Antibiotics (purple bead)
276. Transfusion – platelets
277. Reaction to platelets – allergy
278. Respiratory therapy (wheezing)
279. Poke - 3 pokes to get IV in.  (for CT scan)
280. Poke
281. Poke
282. Dressing change
283. Medication challenge (drinking “contrast”)
284. CT scan
285. TYPHLITIS (!)  (can’t eat for several days so intestines can heal)
286. Night stay
287. Neutropenia
288. Night stay
289. February bead
290. Neutropenia
291. Night stay
292. Dressing change
293. Neutropenia
294. Night stay
295. Neutropenia
296. Night stay
297. Neutropenia
298. Dressing change
299. Relapse?? Mar. 4, 12 (black glass bead)
300. “300 bead”
301. Night stay
302. Neutropenia
303. Re-access – poke
304. Dressing change
305. Biopsy – March 5, 2012
306. Night stay
307. Neutropenia
308. NO RELAPSE!!  (star)  March 6, 2012
309. Night stay
310. Neutropenia
311. Going home!  March 7, 2012
312. Clinic  March 13, 2012
313. Poke - Labs to prepare for transplant
314. Poke – labs
315. Poke – labs
316. Echo
317. EKG
318. CT scan
319. X – rays
320. Scans
321. Pulmonary functions test
322. Poke – Preston donor labs
323. Preston – donor labs
324. Poke – Preston donor labs
325. Clinic  March 14, 2012
326. Poke - Access port
327. Dressing change
328. Bone Marrow Aspirate - Biopsy
329. Lumbar puncture
330. Clinic  March 15, 2012 (family conference, psych evaluation, Preston - physical)
331. St. Patricks Day - Riley Baptizes Brenna 3/17
332. Clinic – March 19, 2012  readmitted
333. Poke - Access port
334. Surgery
335. Line placed (central line for transplant)
336. Night stay
337. Conditioning chemo (for transplant)
338. Night stay
339. Dressing change (new line)
340. Chemo
341. “Tu Nidito”  Jay – Wednesday visits
342. Night stay
343. Chemo
344. Night stay
345. Chemo
346. Night stay
347. Dressing change
348. Chemo
349. Nausea
350. Night stay
351. Chemo
352. Nausea
353. Night stay
354. Chemo
355. Nausea
356. Night stay
357. Chemo
358. Night stay
359. Night stay
360. Nausea
361. TRANSPLANT   March 29, 2012
362. Night stay
363. Chemo (methotrexate – small dose)
364. Night stay
365. Neutropenia
366. Transfusion – red blood cells
367. Transfusion – red blood cells
368. Start TPN (IV nutrition)
369. Night stay
370. March bead
371. Neutropenia (April 1, 2012)
372. TPN
373. Chemo
374. Re-access  - poke
375. Dressing change
376. Fever – antibiotics
377. Antibiotics
378. X- ray
379. Night stay
380. Neutropenia
381. TPN (IV nutrition)
382. Throat piece  April 2, 2012
383. Night stay
384. Neutropenia
385. TPN
386. Transfusion --platelets
387. Fever – antibiotics
388. Night stay
389. Neutropenia
390. TPN
391. Chemo
392. Night stay
393. Neutropenia
394. TPN
395. Transfusion – platelets
396. Allergic reaction
397. Respiratory therapy (wheezing)
398. Dressing change
399. Night stay
400. “400 bead”
401. Neutropenia
402. TPN
403. Transfusion – red blood cells
404. Transfusion – red blood cells
405. Fever
406. Respiratory therapy (wheezing)
407. Night stay
408. Neutropenia (April 7, 2012)
409. TPN
410. Transfusion – volume reduced platelets *hopefully will not have an allergy*
411. Allergic reaction to platelets
412. Respiratory therapy (wheezing)
413. Fever
414. X-rays (lungs)
415. Night stay
416. Neutropenia
417. TPN
418. Re-access port
419. Dressing change
420. Easter  - April 8, 2012
421. Respiratory therapy
422. Fever 105 degrees
423. Nausea – hard day
424. Night stay
425. Neutropenia
426. TPN
427. Chemo – last dose
428. X-ray   fluid ?  Lasix
429. Engraftment starting !!  April 9, 2012
430. Steroids
431. Night stay
432. Neutropenia
433. TPN
434. Dressing change
435. Night stay
436. Neutropenia
437. TPN
438. Night stay
439. Neutropenia
440. TPN
441. Night stay
442. TPN
443. X-ray (lungs) April 13, 2012
444. Night stay
445. TPN
446. Dressing change
447. Night stay
448. TPN
449. Night stay
450. TPN
451. Night stay
452. TPN
453. X-ray
454. Dressing change
455. Night stay
456. TPN – last day
457. Night stay
458. Night stay
459. Night stay
460. Night stay
461. Went home!!  April 22, 2012  (orange bead)
462. Clinic   April 23, 2012
463. Poke  - draw labs
464. X-ray (wheeze)
465. Clinic   April 25, 2012
466. Poke  - draw labs
467. Bone Marrow Biopsy – engraftment study
468. Clinic   April 27, 2012  (blue)
469. Poke  - draw labs
470. Dressing change
471. Pentamidine infusion (purple)  *used to prevent a certain kind of pneumonia.
472. Odd occurrence  (pink)  *severe pain in Riley’s chest (at home)  April 28, 2012
473. Clinic  April 30, 2012
474. Poke  - draw labs
475. Clinic   May 3, 2012
476. Poke – draw labs
477. Dressing change
478. Engraftment results  100% donor!
479. Clinic  May 7, 2012
480. Poke  -  draw labs
481. Clinic  May 10, 2012
482. Poke – draw labs
483. Dressing change
484. Clinic  May 17, 2012
485. Poke – draw labs
486. Dressing change
487. Flushing (every night for Hickman)
488. Clinic  May 24, 2012
489. Poke - draw labs
490. Dressing change
491. Pentamidine infusion (purple)
492. Clinic  June 7, 2012
493. Poke
494. Dressing change
495. Surgery to remove hickman (star)  6/11/12
496. Central line out (orange) freedom from flushing
497. Clinic  June 28, 2012
498. Poke – draw labs
499. Ween cyclosporine  75 am  50 pm  6/28/12
500. “500 bead”
501. Ween cyclosporine  50 am 50 pm   7/12/12
502. Clinic   July 19, 2012
503. Poke – draw labs
504. Ween cyclosporine  25 am 50 pm   8/4/12
505. Clinic (blue)    August 9, 2012
506. Poke – draw labs  (black)
507. Clinic   August 30, 2012
508. Poke
509. Ween cyclosporine 25 am 25 pm  8/30/12
510. Ween cyclosporine  25 am only   9/22/12
511. *x-ray   (6 month tests 9/26/12)
512. *Pulmonary functions test
513. *Engraftment study
514. *nutrition
515. Clinic   September 27, 2012
516. Poke
517. Ween off cyclo  10/13/12
518. Riley returns to school 10/15/12    (seminary + online in library) *full time in Jan.
519. Clinic   October 25, 2012  (blue)
520. Poke  (black)
521. Clinic   November 14, 2012
522. Thrush?  *Mouth GVH  11/14/12  mouthwashes/steroid gel  (black bead with target)
523. Clinic  November 29, 2012
524. Poke
525. Surgery Nov. 30, 2012
526. Riley’s PORT OUT !  11/30/12
527. “Make A Wish” trip (Philadelphia)  12/20/12
528. Christmas in NYC    December 25, 2012
529. Clinic   January 3, 2013
530. Poke
531. 1/30/13   Eye appt. Dr. Rita  
New prescription??   *GVH Eyes  -steroid eye drops + artificial tears for dryness  (eye bead)
532. Eye appt.   Feb 6, 2013
533. Clinic   Feb. 7, 2013
534. Poke
535. Start back on immune suppressants *courage bead
536. Clinic  February 14, 2013
537. Poke
538. Eye appt.  Dr. McColgin   Feb. 15, 2013  *cornea specialists
539. Clinic   February 22, 2013
540. Poke
541. Pulmonary functions test  2/27/13  *1 yr. test a little early because of wheeze in lungs
542. Clinic   February 28, 2013
543. Poke
544. Eyes Dr. McColgin  3/1/2013
545. Clinic   March 7, 2013
546. Poke
547. Clinic   March 14, 2013
548. Poke
549. Clinic   March 21, 2013
550. Poke
551. Eyes  Dr. McColgin  3/22/13
552. 1 Year Transplant!  3/29/13 (purple heart)
553. Clinic   April 4, 2013
554. Poke
555. Eyes  Dr. McColgin   4/5/13
556. Prom   April 13, 2013
557. Clinic   April 17, 2013
558. Poke
559. Fever – antibiotics (purple)
560. Prom   April 20, 2013
561. Clinic  April 22, 2013  (*admitted with fever and severe abdominal pain  Apr. 22-28)
562. Poke
563. Admitted
564. Fever
565. Poke
566. Poke
567. Poke
568. Tests, scans
569. Antibiotics
570. Antibiotics
571. Night stay
572. Poke
573. Poke
574. Poke
575. Poke
576. Antibiotics
577. Night stay
578. Poke
579. Poke
580. Poke
581. Poke
582. Poke
583. Poke
584. Night stay
585. Colonoscopy / Endoscopy (NOT GVH…?   Miracle!)                      
586. PICC line (because SO difficult to access)
587. Night stay
588. Night stay
589. Night stay  Apr. 27, 2013
590. Clinic   May 2, 2013
591. Poke
592. Clinic   May 8, 2013
593. Poke
594. Clinic   May 15, 2013
595. Poke
596. Begin to cut steroids (silver)  6/1/13
597. Eye appt.  Dr. McColgin  6/3/13
598. Clinic   June 6, 2013
599. Poke
600. “600 bead”
601. Eye appt. Dr. Rita  contacts? Only 2 x’s per week
602. Cut steroids 6/15  40 am even days 20 am odd days
603. Clinic   June 20, 2013
604. Poke
605. Cut steroids 6/ 30 40 am even days 10 am odd days
606. Clinic
607. Poke
608. Eye appt. Dr. Rita  July 12, 2013     *tried contacts, still too dry.  Suctioned to eye.
609. Cut steroids  30-10   July 15, 13
610. Clinic   July 25, 13
611. Poke
612. Cut prednisone steroid  20/10  July 30, 2013
613. Cut steroids  10/10   August 15, 2013
614. Clinic   August 22, 2013
615. Poke
616. Cut steroids   August 30, 2013
617. Cut steroids  5/5   September 15, 2013
618. Clinic   Sept. 19, 2013
619. Poke
620. Cyclo ween  25/25
621. Cut steroids  5   September 30, 2013
622. OFF STEROIDS  October 15, 13
623. Clinic   October 24, 13
624. Poke
625. OFF CYCLOSPORINE  November 2013
626. Clinic  December 5, 2013
627. Poke
628. December 13, 2013  *2 yrs. since diagnosis
629. OFF Valacyclovir, penicillin  Dec. 25, 2013 
630. Clinic  Feb. 6, 2014  *Mission paper appt.
631. Poke
632. Dr. Roberts  *well check  March 11, 2014
633. Shot #1    Start immunizations  3/11/14
634. Shot #2
635. Shot #3
636. Shot #4
637. March 29, 2014  2 yrs.  post-transplant **survivorship clinic
638. Clinic   April 10, 2014
639. Poke
640. Shot #1   Immunizations  4/16/14
641. Shot #2
642. Shot #3
643. Shot #4
644. Eye appt. Dr. McColgin  April 25, 2013
645. Pulmonary Functions test   5/16/14
646. EKG   5/16/14
647. Echo  5/16/14
648. Shot #1  Immunizations  5/27/14
649. Shot #2
650. Shot #3
651. Shot #4
652. Eye appt. Dr. Rita  June 6, 2014
653. Clinic  June, 12, 2014
654. Poke
655. Shot #1  Immunizations  7/9/14
656. Shot #2
657. Shot #3

2.15

Friday.   Today was our appointment with the cornea specialist, Dr. McColgin.  She agreed, there was no doubt that Riley had GVHD of the eye.  She folded back his eyelids and said that he has scarring and even open sores on the inside of his eyelids.  Ugh.  Graft vs. Host Disease attacks his body tissue and can occur anywhere.  Right now he is experiencing severe dryness which has caused his eye to be scratched every time he blinks.  His vision has not yet improved in his right eye even with the steroid eye drops.  Dr. McColgin wants to put a "plug" in the drainage duct in his eyes.  This will hopefully keep what few tears he is making, in his eyes.  She hopes that the steroid drop will help to improve his vision before she sees him again in two weeks. 

2.14

Thursday.  Clinic check up.  Back to --once a week-- visits...  I asked Riley if he regretted not having the port now that he has to get blood drawn once a week again.  He said, "No way!,  I would much rather have a poke in the arm then a poke in the chest anyway!".
Riley has been back on the immune suppressant for one week now.  Hanging in...

 A favorite pastime.

2.9

Saturday.  Riley and his friend Daniel are coaching flag football for our community sports league.  They are having a great time and doing a fantastic job!  

2.7

Thursday.   Today Riley had a check up at the clinic. We had previously called Dr. K about the graft vs. host in his eyes (after the eye appointments). Riley also told him how the cramping in his fingers and joint pain had gotten worse. We were surprised to see that he had lost 6 pounds since our last visit (1 month ago).
The conversation went a little like this:
Dr. Katsanis: "Well Riley, your mouth looks worse, your eyes are obviously having problems, your joints are affected, you have lost significant weight in the last few months which means your body is not absorbing nutrients (graft vs. host of the gut), and to tell you the truth... your lungs don't sound that great either!!"
The GVH that Riley has experienced up until this point seemed to take a back seat in severity to the news that Riley now had it in several systems. The GVH of the mouth that Riley has had since November has been treated with a topical steroid gel. Now that it is affecting other areas he must go back on cyclosporine, an immune suppressant. This will hopefully tell his body to RELAX!  Right now he is at war with his new system. Since Riley started having GVH symptoms beyond the 3 month -post transplant- mark, it is considered "chronic". This means he could experience these symptoms for a year, five years, or forever. We have no way of knowing. ... Sometimes the symptoms can “burn out” after a couple of years. That will be our prayer.

Riley's doctor is a very serious man and had just explained the situation Riley faced. He then smiled and with an excited spirit said, "But the good news is when you have Chronic Graft Vs. Host, the chances of relapse are small!" Along with fighting off Riley's system, the CGVH also fights off any remaining diseased cells. This is known as "graft vs. leukemia effect".   Although that is good news, I still felt as though our world came tumbling down a bit.
. Oh... he was so close! Riley was down to the steroid gel for his mouth once a day and his bactrim pill only on the weekends. Now he would not only be back on the immune suppressant, but a slew of other medications BECAUSE he is on the immune suppressant.

I think we were in a bit of shock on the way home. Not a big surprise, but not exactly what we wanted either.   Obviously. We did agree that Riley was in a much better place than last year this time... That is Riley... so positive.

This is Riley's NEW line up. 

 

This is the packaging for the cyclosporine.  Each "skunk" smelling capsule, individually wrapped.  It makes for setting up the pill box for the week "a job"!

 

2.6

Wednesday.  We went back to the eye doctor for a check up.  They want to see if the eye drops are helping with the swelling. 

This awful test is to see how much moisture Riley has in his eyes. 

Test outcome... he is as dry as a rock. 

And that was a direct quote from the doctors assistant. 

After several tests (including the dye in the eyes), it is concluded that the swelling has gone down about 20%.   Not enough.  Our eye doctor has referred us to a cornea specialist.  They are "squeezing" us in on the 15th.  Riley's poor eyes were so sensitive after all of the tests and "eye baths", he just closed them on the way home.  In fact the doctor said she gives Riley permission to close them as often as he can.  "Be the laziest teenager you can!" she said.  Riley's eyes are so dry that every time he blinks he is scratching his corneas.  :/

2.5

Tuesday.  Today I brought the kids in for dental check ups.  These appointments have been set for 6 months.  Riley has not been seen by a dentist for so long and did not have an appointment, but last week when I called to see if he could take my slot, they gladly fit him in!  Now that Riley's port is out, he is able to go to the dentist without first going on antibiotics.  yay!
 
His mouth has been so hard hit!!  First of all during his chemo treatments and transplant he could not even brush his teeth. It was because his platelet count was so low,  just brushing his teeth would make his gums bleed, and it wouldn't stop!   He did several mouthwashes everyday, but no brushing.  Then he has been dealing with graft vs. host in his mouth since about November.  It started out as severe dry mouth and then progressed to open sores where he could hardly eat!  Yes, his mouth has been through a lot.  
The dental hygienist showed me that his mouth is still severely dry.  She would press on the inside of his cheek and I could see some saliva coming out.  She said that there should be more.  Then she pressed on the other side and nothing.  NO saliva at all. 
Overall it was a good appointment.  They were very gentle.  He has 2 cavities, but honestly I expected more.  He is tough.