A Brooke Mulford Update

Well, Brooke did fabulous this final round of antibodies (no fevers, blood pressure issues, just a raspy voice from all the chattering she does when she’s getting antibodies)!

We were able to go home Monday night (discharged about 7pm). I have to admit that leaving inpatient for the very last time (hopefully) is not as easy as you might think. I have met so many wonderful families on the onco floor were we have essentially lived the past 15months and I will miss them all. Plus the nurses, Sarah (child life), Stephanie (social worker) and so many others that work on the floor were just so great to us. I also have really had mixed emotions about Brooke’s treatments ending. I know, I know…you must think that I am crazy and I think only another parent going through the same thing can truly understand, but treatment at least gives you the feeling that you are fighting the beast and as long as you are going through treatment (as bad as it can get) you feel as if you are doing everything possible and that the cancer is being destroyed and not coming back. Once the treatment is over you feel like you are opening up the doors to potentially let the beast back in.

Part of me is relieved that my baby is done with it and part is scared to death. I know that I need to put my fears to rest, put my faith in God and move on with our lives but at times that is easier said than done. I have read every scripture in the Bible about fears and anxiety this past year (over and over and over again) and have found great peace in His word but every time I hear of another NB child earning their angel wings (and tragically there have been many these past couple of weeks) the fears come flooding back. My heart aches for each and every one of these families… Yes Brooke is NED (No Evidence of Disease) but the scary fact is that there is a very high rate of re-occurrence. Please continue to pray for her especially in this next year as most kids seem to relapse in the first year after becoming NED. Your prayers comfort me more than you could ever know.

Back to discharge day…one of the reasons we left CHOP so late on Monday was because Brooke got her hearing aids and we spent about 3 hours with audiology learning how to put them in, take care of them and the audiologist (Wendy) made some adjustments. Brooke has been doing great with them and wearing them more each day. Can you believe that they came with stickers you can decorate them with? They were already pink and purple! Another audiologist gave her beads to put on them too (one purple and one yellow for each ear…at least they’re NB colors)! They even have Jibbitz (the things you can put on Crocs) type things you can put on them and they gave Brooke a butterfly but I might just have to draw the line with that! My girl loves to accessorize but enough is enough! Well, at least she likes them and that is a blessing (no matter how wild they look)!

Tuesday we had a great day at home. Brooke slept until 12:30 and we had a very early dinner at Market Street (3:30). Later that night I tried to flush Brooke’s “tubies” (as I have to do every night to keep them open). The line was sluggish and I tried to force the flush a bit and Brooke screamed in pain grabbing her neck right where the med comp travels. Well, there’s that fear thing again! I called CHOP and the fellow on call was pretty sure there was a clot in the line and he would have our fellow call us today to let me know what he wants us to do. After I hung up with CHOP I called Dr. Dave (at 10pm I might add) and he was over in about 2 minutes to check Brooke out. He assured me that she was ok and allowed me to actually get a decent night sleep. Dr. Dave you are AWESOME!!!!

So after talking with Dr. Weiser, our Fellow, this afternoon we tried to get the potential clot taken care of locally with no luck. So off we went back up north again! We got to my Mom’s house in NJ around 8:30pm and have to be at CHOP in the onco clinic first thing in the morning. I do feel more comfortable brining her to CHOP where they do this sort of thing all the time but I am SO SICK of the drive! Brooke’s Med Comp (tubies) is 15 months old which apparently is pretty incredible. Every nurse and doctor are amazed that she still has her original Med Comp and they have all said that they have never seen a child be able to keep their med comp even half this long (most kids have to have theirs out due to line infections before they are even finished with chemo). So once again props to Dr. Dave (and Dr. Jeff, Tonia & Kellie) for doing such great jobs with her dressing changes each week! So hopefully we will be in and out quickly tomorrow and that she will have 2 working lumens. We are trying to keep her line in until she has her end of study scans and tests to spare her from having to get needle sticks and IV’s placed. Brooke is still doing part of her treatment at home: GM-CSF shots until Sunday and Accutane until April 28th and then scans will likely be around the first week of May.

Well, it is getting late and I do need to get up early tomorrow but I will update you as soon as I can. Happy St. Patrick's Day!

Thank you and God bless,

Amy