Jan 23rd 2014
Duffy Blogging (mom)
It’s always hard to begin to describe our life lately in kind of a nutshell. Kaylee rocked her last round of methotrexate so much so, that we were allowed to leave a few hours earlier than expected! Now here it is, two weeks later and I took her to get her blood labs done on Wednesday morning. I got a phone call from the Clinic today that she’s ok to begin her last round of her methotrexate drip. Her ANC count (illness fighting white cells) is over 1,000 (which is awesome), and regardless of the fact that she is getting a cold she has been cleared to go. So we are packing up again for a 4 day hospital stay at Children’s Hospital of Atlanta. Tomorrow (Friday) we will begin our day at the CHOA clinic (which is 50 yards from the hospital) where Kaylee will get her vitals done and her port accessed. She will begin heavy amounts of fluid until we are assigned a room in the AFLAC section of the hospital. She will be cleared to start the 24 hour methotrexate (chemo drip) and when that is finished, she will start heavy fluids again to flush the chemo out of her body as fast as possible. We have gotten pretty used to this routine and know it is usually 2 days from getting discharged from the hospital that she starts to totally feel like crap.
This is where I can back up and tell you how she has done the past two weeks.
We returned home Monday late afternoon (which was soooooo much better than coming home at night like the chemo round before!) Tuesday morning I had gotten K dressed and ready for the day before the ADT security guy came to update our home security settings. K ran to greet him at the door.While he was up in our attic I was putting away clean dishes. Kaylee was playing with her Minnie Mouse by the fridge in the kitchen and she slipped & face planted the hardwood floor. I know by now not to freak out if she falls b/c it causes her to cry. I looked over and said “your fine honey, it’s ok.” Then I saw blood. I ran over to her and through her ear piercing screaming cry; I went into total panic mode, scooped her up and tried to stop the bleeding coming from her mouth & see if we needed to go to the hospital for stitches. No one tells first time moms how much mouth injuries bleed! So while I’m trying to keep pressure on her lip with one hand, I’m trying to call Chris with the other. When he doesn’t pick up his phone twice, I texted him 911. Chris meanwhile is meeting the Dr in the emergency clinic for a possible broken rib from a friend who gave him the Heimlich incorrectly after choking that morning! (We are a mess! Lol)
Enter the Godsend. The ADT guy strolls into the kitchen and calmly tells me he used to be a EMT and could check K’s lip to see if she needed stitches (since he clearly heard me mumbling on the phone frantically to Chris’s voicemail about K’s platelet count and busting her lip open, and all this blood etc) The ADT guy said while he checked her lip, I needed to put her pacifier into the freezer. He took a quick look & assured me that her mouth would not need stitches, but she would be in pain. Thank God for him being there! As soon as I got her bleeding under control I gave her the frozen pacifier to keep the swelling down and Tylenol. Chris came home for lunch to make sure all was ok and our planned play date came over early to help K keep her mind off her “owie.” (Jennifer Gould you are a Godsend for coming over with wet hair and no makeup on simply b/c I sounded so panicked about K falling!)
Luckily, there have not been any other injuries, but she has learned a ton of new words, had a few play dates and a few side effects from the chemo. She did get mouth sores again, but since we now know what to look for, we can nip it in the bud pretty quickly. It was this week that had me a bit concerned. K started to get insomnia (side effect from chemo) and then would cry in her sleep, and wake up constantly at night. All but one night she ended up sleeping with us late at night. For a mom, this is a bit stressful when all you want is your child to be happy. She looked tired all week, but took amazing naps every day. I would take her to her ‘happy place’ (the playground) and she would look sad after a few trips down different slides and then say “I go home.” She wanted to go home. This isn’t normal for her. She was such a strong little girl getting her blood labs done on Wednesday, almost looking bored waiting for it to be over & just smiling and saying “Daaaaa-neece!” (Denise is our lab tech that is fabulous.)
I have no answers to the things that worried me this week but I will bring it up to the clinic nurses tmwr.
All the small concerns seem so trivial to things that really could be going on, but to be honest all the prayer is really adding up and helping beyond words. If I sit back and think about all that she has been through and has yet to endure it makes me cry. How does she do this?! I explained what it is like this week to my brother “It is like a fighter getting beat up, and once that fighter is finally healing, she gets beat up again. Can you imagine wanting to keep fighting…month after month? She does. She blows my mind, and all we can do is cheer her on, try to make every day count to keep her mind off any side effects, pray for healing, and thank God for doing all that he has already done for her!” We are blessed that she is so young that to her, all of this is normal. It’s sad that THIS is ‘normal’ for her, but I imagine this would be much harder for an older child. I also cannot wrap my brain around the fact that next month she will be 2 years old!! How did that happen so fast? It also is the month that begins the next phase called Delayed Intensification. I’ll discuss the next phase on the next blog, but I am prepared for all of her hats to come in handy then . (Hey, at least it’s a perfect month to wear hats with all this cold weather, right?!) God bless her.
Before I go into this week’s prayer requests I do want to mention that we are discussing wanting to do a blood drive in Kaylee’s name this spring since the Children’s Hospital of Atlanta so badly needs blood donations. We want Be The Match to be involved as well (Google; Be The Match.) We will need volunteers and any businesses that are interested in being involved. I’ve been told this will take a minimum of 30-40 volunteers to put signs up, saturate social networks, organization etc… So I just wanted to throw that out there for now. We are still working on the date~ trying to decide on doing this in March or April. We already have had a large space offered to have the blood drive, which is here in Holly Springs. J
Our prayer request this week: For a calm Kaylee during her port access tmwr & de-access on Monday. (She hates this and is now arching when they try to put the needle in even though she has numbing crème on.) We are asking for prayer that this wknd will go by quickly, and that she will clear the methotrexate out of her system quickly. We are praying that she will not experience any side effects from the chemo (this can be done!) and that she will get some needed rest during this chemo. Above all else we are thanking the Lord for all He has done for Kaylee and our family, and all He continues to do. We are thanking God in advance for healing Kaylee of this cancer and continue to trust His timing and purpose of all that is going on. This is after all our new normal and we are continually reminded Do Not Fear, Gods got this!
Jeremiah 29:11~ “For I know the plans I have for you” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”