I'm trying to keep this up for a record for Avery and our family of our journey. The good times and the hard times, but I'm struggling.
Last week was some very challenging, long, tiring few days and Avery has to just take what comes.
Wednesday (Dec 7th): She wanted so badly to go to her Elementary Christmas program, but her mouth sores were getting so bad. She was having a hard time talking. She insisted she was going so I told her if she had to, to just mouth the words to the song. During the program, she was so excited when she seen Jed on the big screen honoring the soldiers. I took her to Carson's 4 month Dr. appointment to see if there were anything else we could do for mouth to give her some relief. We already have a mouth wash, but he prescribe one with numbing stuff in it. We got home just in time to start getting ready for the night Christmas program, but she was just in too much pain and I told her maybe we better not go. She felt so horrible she went with this plan. I was so glad she and us were able to watch her in the morning. I just hate she (and us) have to miss out on so much.
Thursday (8th):We did try to go to the airport to see Jed fly in from Iraq, something we were all so excited about. We went knowing we would most likely be staying in Cedar going to the hospital because she had a fever. At the airport, we seen Jed for a minute, but the crowds caused me to panic and Avery did not feel good and sleep in my arms. I sat with Avery the farthest away from people I could find. Her fever continued so we started making phone calls to the oncology office.
After seeing Jed at the airport we headed to the Doctors office for her fever. Her pedicitrian was nice and was willing to treat us there instead of going to the ER, which she absolutely dislikes. I called and arranged for Home health to come access her port. She missed on the first try. Then the normal routine every time she gets a high fever: CBC check, blood culture, give her IV fluids and antibiotic through her port. She was having difficulty swallowing at all. The sores were on both cheeks making them swollen, on her tongue, down her throat, on her lips making them bleed and underneath her tongue. This were worse then the time she got them on Interim Maintenance I. I felt so bad for her. She was throwing up. We went home and was able to see Jed again for a minute, but she was just in lots of pain. Typically we can not give her Tylenol because they don't want it to mask a fever, but where she had the antibiotic we can for the next 24 hours.
Friday (9th): Again she started fevering (is that a word?) around 5 in morning. We kept checking it and it reached 102. They want them seen if it gets 100.4 or higher. We called oncology again and she said where it hadn't been 24 hours yet we could give her tylenol again and not go to the ER, but wait until her pediatrician office opened and go there. Yay for that. We went back and did the same routine as the day before. She wasn't able to eat and throw up a lot from all the crud down her throat. Her counts were dropping. She was out of it and was so tired and felt horrible. Home health come again to the doctor's office to access her and it took three tries. Seriously. I. Hate. That. Her HCT was 20, HGB, 7 and platelets were dropping to 64. I knew we were getting to the point of blood transfusion. We were scheduled for CBC on Sunday for a trip to SL on Monday. Her oncologist said lets see what they do. She didn't want to stay accessed, but we knew HH was coming to check counts on Sunday plus we thought we'd be going to SL on Monday. With so many pokes this week the chance of infection is greater. I told her I would pay her 5.00 to stay accessed until Sunday and 10.00 if she keep it until Monday. She was mad at me, but we left her accessed. I think after more pokes she decided this wasn't so bad and she stayed accessed until Thursday when we ended up going to SL.
Saturday: (10th)Finally some big improvement. Was able to eat, had some energy (even though her red blood count was dropping) and her mouth was looking a lot better. She was up and going, so this was a big improvement from where we had been.
Sunday: (11th) Another blood draw to see if we made counts. She needed her ANC to be over 500 and platelets over 50. I was somewhat surprised she didn't make counts on ANC or platelets. I was just about finished packing, had arrangements for the other kids, Grandma Kathy was planning on coming with us to go to a program of Landon's and boom you remember....with our lives you have to be so flexible, change of plans is the norm and you can never plan on anything nor should anyone else. Grandma left for SL by herself. Avery's ANC was exactly 500 and platelets were 46. Her RBC were still low, but holding were they had been on Thursday and Friday.
Monday: (12th) Primaries calls and said I guess you know Avery didn't make counts. Also they told me she needed a blood transfusion. The nurse asked about her energy because when your red blood cells are low you are pale (yes she was) and you don't have energy because your oxygen is low. We had seen a major improvement from how she was for 3 days. She has to have special radiated blood so they had to send for it from Salt Lake. They told me it was being flown in. Thanks to all those that donate your time and give blood. It really does save lives. So glad someone out there was able to give my little girl the blood she needs and I'll never know who that someone is.
Tuesday: (13th) We had a blood transfusion at the infusion clinic. Avery was getting discouraged and somewhat upset. This is just too much time for a kid to be at the hospital. She had had enough and honestly we are getting so worn out. So glad Miss Iron County came to pay her a visit. I so appreciated her lifting her spirits. I have no idea why I didn't even snap a picture. What was I thinking? Obviously I wasn't. Her platelets dropped to 26. A transfusion of red blood cells don't make platelets go up. If they go too low, we have to have a transfusion of platelets.
Thursday: (15th) Back to SL to the hospital. We had to go no matter what her counts were. She got Vincristine chemo, but her Doctor said she was holding the MTX chemo due to her bad mouth sores. They didn't run a CBC to see if she made counts on her platelets the Doctor had already made up her mind about no MTX this time. Of course mixed emotions we don't want to see her that bad, but that means we go back in 7 days (right before Christmas) instead of in 10 days (right after Christmas) Not sure which is worse, but I think I'd rather after Christmas so I make sure she feels good on Christmas. Just one more thing I can't control. I want to enjoy Christmas and try to forget about all of this and more importantly just have Avery feel good.
Also, today was our first time to try the lighter sedation method for her Lumbar Puncture. She stays some-what awake, her eyes are open, but they give her medicine to prevent her from remembering (versed) and medicine for pain/sedation (Ketamine). I get to stay in the room so that is good. She was scared and cried a bit. It was just something new, but she handled it like a champ and the doctor and nurse said she did perfectly. Good Job Avery. Love you!
Thursday (22nd): It's 1:00 in the morning and I'm adding to this post I never finished. In 4 hours I wake up (along with Avery and Johnny) to get ready to leave for yet another trip. Although we go so close to Christmas and that is for sure not ideal. We have reached a HUGE milestone. This will be our last treatment on this phase and with the most active part of treatment. We will have two weeks off! Doesn't sound like much, but we'll take it. We want to celebrate big. It has been a long, tiring, worry-some 8 months and will continue to be. We are so grateful for those who ask how we are doing and care so much. It really does keep us going. We are just so ready for life to slow down even just a little bit. I don't want to look back and forget this time with my other children. We are excited for this big milestone and want to plan something pl. Any ideas?
As Christmas is so close! We again are reminded of those generous people that do nice things for us. We appreciate everyone's support! At times, you feel so isolated in this "cancer world", but then someone lifts our spirits again. We had a loud knock on the door and there were 3 books with a jar of money. So nice! Or someone knocked and when Johnny answered they handed him a card and ran. He was literally speechless. Part of me wants to know who they are, so I can thank them. But obviously they don't want us to know and who knows maybe they'll know of our appreciation by reading this.
We want to pay it forward in some small way and are excited tomorrow to take some presents to a 4 year old boy tomorrow who will be staying in the ICS for a long time (this is where we stayed for a week when Avery was first diagnosed). He has relapsed from AML and he is alone a lot of the time. The staff sit with him at night, until he goes to sleep. I can't imagine Avery being there at the hospital by herself. It breaks my heart.
Thank you to ALL!
2 comments:
Two posts in a Week. It is another Christmas Miracle!
Isn't that the truth.
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