Duffy blogging (mom)
(Too tired to make spelling and grammar corrections tonight.)
So much has happened in the last 14 days. I have meant to update this earlier, but I am now just finding time to try to write half of this while she is napping and the other half after her bedtime tonight. I last wrote on day 8 of this phase. It is now day 23 of this phase so I will do my best to get caught up.
I took K to the cancer clinic for her chemo on Feb 28th. It was a quick chemo day but we were there for quite awhile. Kaylee was her usually peppy self, wanting to say” Hiiiiiiii!” to everyone that passed by the room we were assigned to. She still fights getting her port accessed and de-accessed but she is fine just a few minutes later. She had Vincristine and Doxorubicin chemo, and when she was done she gave Nurse Karen a hug and asked for a sticker (or rather demanded one) “Sticker peas!” It was around K’s normal naptime when we left to head home, so I did everything I could think of to keep her awake in the car so she could take a good nap in her crib at home. I didn’t realize 575 would be shut down due to a fatal accident, so it took us much longer to get home by taking a detour, and by the time we did get home, she didn’t want to nap. I did not get the memo that it was no nap Friday. Don’t get me wrong, I tried. I put her in her crib, but our little cutie just laid there and sang songs & talked to her stuffed animals for a solid 45 minutes before I came to get her. Needless to say she went to bed easily that night.
We had a pretty good weekend, and then Monday came and I started to feel like I was getting sick. I am the hand sanitizer sergeant. I use purell wipes on any cart I put K in for shopping and that is before putting her cart cover down, so I have no clue how I managed to get hit with another cold, but this was wicked. Tuesday morning I woke up feeling like death, and Chris tried to explain to a very energetic Kaylee to go easy on mommy while he was at work “mommy doesn’t feel good, be sweet.” Apparently she listened, because she was ok that I canceled our play date & seemed content playing at the house all day. I napped when she did and almost cried when Chris came home early from work to help me. I was worried all week that I would get her sick, but that is pretty inevitable when I’m with her all day everyday. We made one grocery visit to get much needed ingredients for my homemade chicken noodle soup (that K loves,and I needed for my cold.. plus she got to see Jenny whom K adores and wont let out of her sight while we shop) The rest of the week consisted of canceling play dates and trying to get her outside to play for at least an hour. K loves playing outside, and especially chasing after the dogs. She was a ball of energy, eating well and only woke up one time in the middle of the night to sleep in our bed. I called the Clinic on Thursday to let them know that I was getting over being sick, that K could very well be coming down with it as well, and should we still plan on coming the next day for chemo? They said as long as her blood counts were ok, they would proceed.
The next day was March 7th and it was the best I had felt all week, so Chris and I took K to the clinic to get her Vincristine and Doxorubicin chemo as scheduled. We met a new nurse who K wanted to hug twice while she asked us the usual weekly questions while waiting for her blood counts to come in. K’s Dr; Dr Pauly came in to share with us Kaylee’s counts. (Kaylee had to hug her too, love my sweet girl.) Kaylee’s ANC count (white blood cells that fight off infection) was 500 (they usually will not do chemo unless her ANC count is 750 or higher) and they debated for awhile on whether or not she should go ahead and be admitted to the hospital.(??) I immediately said “Whoa…wait. She does not have a fever and seems fine, so there is no need to be admitted to the hospital…that is what you told us, right? Hospital stay only if she’s sick or has a fever. Her ANC count has to be higher than 750 to do chemo, but no hospital stay…correct?” Dr Pauly said she actually felt comfortable with Kaylee doing the chemo, despite the blood count and that she trusted us that we would bring K straight to the hospital if she spiked a fever, so she wouldn’t admit K to the hospital just yet (insert sigh of relief from me!) Chris had to leave for a work meeting, so I stayed with K for her chemo. Kaylee wanted to help Nurse Mary push the last remainder of Doxorubicin in the syringe into her port (such a helper), and watched TV while she received the Vincristine. It was getting late in the afternoon when we were done for the day, so she took a long nap in the car while I dealt with Atlanta Friday traffic to get home. Kaylee had to start a week of steroids again that night, and I prayed it would be a bit easier on her this week.
Saturday morning she woke up and clearly the steroids had kicked in. She was happy one minute, crying over nothing the next. Ex: Me: “Kaylee, do you want a yogurt, waffle or bagel for breakfast? K: “Bagel..butta. Me: “you want a bagel with butter? Ok. Let me get you some juice while that is toasting.” K: (now in a hysterical fit) Nooooooo juice! Milk! Milk! (sobbing) Milk Mommy! Me: Ok, ok..Calm down K..no juice…getting you milk. (K sniffling her sobbing away over this apparently HUGE mistake on my part. (Real life..steroids.) She also developed more mouth sores from the chemo again, except now she knows to say “Swab da mouth! Make it better!” (Perhaps from all the times we explained to her that we were swabbing her mouth to make it feel better.) So we swabbed her mouth with magic mouthwash to numb and soothe the sores.
The day got a bit better when we took her to the playground with only a few way out of proportion hysterical fits once we got home. Chris had planned out a date night for us, (thank you Lord) and his mom, stepdad, and stepbrother came to visit (and then babysit once we put K to bed.) They got a glimpse of what we deal with when she’s on steroids as she was good one minute and then a mess the next. She went to bed with no issues and Chris and I got to go on a date! I had forgotten how good it felt to get out with my husband toddler-less! Such a fun, and much needed night out! (Thank you again Debbie, David and Ethan!)
K had a rough morning on Sunday but we had a surprise for her. Her great grandpa and grandma (Pop-Pop and Mom-Mom) were coming to visit her. So when she woke up from her nap, I told her Pop-Pop and Mom-Mom were pulling in the driveway. She was so excited and could not wait to see them. She was especially excited to see Mom-Mom had brought a gift of a Minnie Mouse hand towel for her. “Minnie!! Awww tank you!” She had a great afternoon visit with them and smiled and laughed quite a bit. They were such a help to me b/c at this point the cold that I had, took my voice with it. It was a beautiful day so we spent the majority of the day on our deck which K loved.
Monday March 10th, K slept until 8:45, (the time changed so it was her regular time of 7:45, but Spring Forward makes it sound later.) She refused to eat anything for breakfast and wanting to cuddle with me to watch Sesame Street (snuggles with my lil one? Count me in!) By 11:00 Kaylee looked me and said “Mommy, I nap.” She clearly didn’t feel well and wanted to sleep. When she woke up she seemed to feel better saying “Slides? swings?” this is Kaylee language for she wanted to go to the playground. I got us ready and took her to the playground and after going down one slide 3 times, she said “I go home.” I repeatedly said “no swinging? No more slides?” She looked sad and so tired and said “no, I go home.” As soon as we got home it was “Mommy cuddle me. Watch Minnie.” I was beginning to worry a bit, because she was either getting my cold or her counts were super low. We cuddled on the sofa and watched Mickey Mouse Clubhouse for an hour. She barely ate dinner and went to bed early.
Tuesday morning I ended up calling the clinic b/c Kaylee developed a red rash from her cheek to the back of her ear. The nurse assured me this was a side effect of the chemo. I told her how K had been acting and she asked me to get K’s blood counts on Wed rather than Friday b/c it sounded like K needed a blood transfusion. (When K’s counts are low and she needs a blood transfusion she is normally pale, very lethargic, doesn’t eat well and generally feels lousy. This was all going on.)
Wednesday morning was interesting, all before we needed to leave for the lab to get K’s blood drawn. While I was getting Kaylee’s morning steroid ready, I accidentally shot some of the Dexamethasone in my eye, (causing me to panic and splash about a gallon of water in my eye to get it out), Set the house alarm off (for the 162nd time this month on accident) and then lost my phone (in the house, mind you) for a solid 30 minutes. Clearly, I needed more coffee. At any rate, we got to the lab and K was excited to see our favorite lab tech Denise and K gave her a big hug. K pointed out which finger Denise could prick and even Denise noticed Kaylee was looking rather pale with red rings under her eyes. At this point I would’ve put money on the fact that she needed blood. K took another early, long nap once we got home, and only wanted to cuddle almost all day. She felt terrible and I was anxiously waiting to hear from the clinic about her lab results.
Thursday morning was hard. I went in to get Kaylee who had woken up and as I picked her up, I realized a small clump of her hair on her pillow. I knew it would happen, I just didn’t know when. While I was snuggling with Kaylee, Nurse Mary called me from the Clinic and shocked me “Well, Duffy, I am surprised here. Her hemoglobin is actually fine. Her hemoglobin is 12.8 (blood transfusion only needed with a hemoglobin count of 8 or below.) Her ANC count isn’t high enough for chemo, but this is her week off chemo, so we will need you to get her blood counts again on Monday to see if she will be up for chemo on Wednesday (March 19th) as scheduled. Her platelet count is fine though. Seems she must be struggling with the combination of the chemo and the steroid and possibly fighting off the cold you had. Could be a few days until she is back to her energetic little self.” At this point I knew I needed to update the blog and gather prayer warrior’s b/c Kaylee looked so pale and sick I was worried. Was chemo finally knocking her down this round? Throughout the day Kaylee’s hair was continuously falling out and covering her shirt. It wasn’t until bedtime when I prayed with her that it really made me sad. If it was happening to me, who cares…no biggie! But it is our 2 year old daughter. (Most won’t get my way of thinking until you have to live this.) I just have always hated the idea of others seeing her without hair, which causes the immediate realization of any passer by of “aww that little girl has cancer.” And get the sympathetic smile from people we don’t know. I wish people could automatically know what a fighter she is, what an amazing job she is doing and the sympathetic smiles would be high fives to Kaylee instead.
Last night she woke up screaming in her crib shocking Chris and I awake. We brought her to our bed, and it took a few minutes to calm her down. She immediately asked for Tylenol, saying “don’t fell good mommy.” (broke my heart.) Clearly, there must have been people praying because she woke up this morning sweet as can be. Although she declined any breakfast and wanted to cuddle the first part of the morning, the afternoon is when she changed. I saw the smile come back! The coolest part of the day is when I had to return an item that didn’t work to the All4kids consignment sale I had been able to attend the other evening. I had to explain to a volunteer why I couldn’t come inside (no way was I going to risk taking K in there with her low ANC count.) A different volunteer came out to bring me my refunded money and asked “did I hear right that your child in the car is going through chemo?” I explained K’s diagnosis and her low counts and this sweet sweet woman said (as Kaylee is shouting “hiiii!” to her) “I hope this doesn’t offend you, but my husband is a Leukemia survivor, and I would love to pray for her with you if that is ok with you.” I immediately told her we would love that, so she walked around to Kaylee’s side of the window that I had rolled down, said hello to Kaylee and prayed a touching prayer of healing over her. When she said Amen, she seemed surprised that Kaylee gave her an enthusiastic “Amen!” Lol. I do not know this woman’s name but she touched my heart today, and I was very thankful for such a surprising blessing!
The rest of the day was great. K wanted to play outside! She was laughing and playing with the dogs again! I cannot explain how happy this made me to see her feel well enough to play! She was even giggling at bedtime with me and Chris. Love having my happy girl back! I am praying that this continues.
As of last night, she is now done with her steroids for this phase! AMEN! As thankful as I am that she doesn’t have to take any more steroids, I have mentioned that this phase is brutal, and it is. Next week begins the Cyterabine chemo injections we have to give her at home, and she will be getting chemo at the clinic twice next week (depending on her blood counts.) She will be starting a new oral chemo she has never had before called Thioguanine as well as getting sedated to get Methotrexate chemo inserted into her spine and an hour IV drip of Cyclophosphamide chemo through her port. Big week! I don’t know whether to pray for her counts to go up for her to just get this over with, or to pray for her counts to remain the same to give her a week break! She has to get her blood counts done again on Monday, so we will know more then, but our prayer requests for the wknd is that God will just keep our little girl healthy, and happy. As much as I love cuddling and snuggling with her, I would much rather her just be happy. That while He is healing her from her Leukemia, coming off the steroids will not have any negative effect on her. I am going to go ahead and ask for prayer about the injections that we have to give her. This has been just a nightmare in the past when we had to do this, so a little extra prayer will be so helpful.
We are thankful that the chemo is doing its job and Kaylee is kicking cancers butt! She has had a rough week, but I am so proud of her! She has no idea that at only 2 years old, she is my little hero! God has His mighty hand on her and although I cannot wait to get this phase over with, I know that we will never take her health for granted. We remain focused & faithful that there is not a possibility that she could lose this battle. She will beat cancer and come out with an amazing testimony to share!
Thank you for praying for Kaylee, for us and the weeks ahead. We are almost halfway through this monster of a phase, and your prayers are what is getting all of us through it!
Until next week………….
Jeremiah 29:11 “For I know the plans that I have for you,” declares the Lord “plans to prosper you and not to harm you, plans to give you hope and a future.”