#HealingForHaylie-Post 81

Haylie Update- Feb 13

Yay! Haylie is officially done with the delayed intensification phase! Oh we are so happy to be done with this phase. She just had her last Erwinaze shot!! They have been the most painful and frequent chemo shots that required us to come to the hospital 3 times a week. So very excited that she just had the last one!!!

Her levels are still very low, so we are sitting here while she gets another blood transfusion today. Her platelets are looking good and her ANC is finally starting to rise again. It was at 90 today, which is not good, but it is up from 20 on Monday. Because her levels are so low, she will get a week off of chemo before we begin the next phase, Maintenance. 

Today didn’t go quite as planned, but we got through it. We knew Haylie would need a blood transfusion because her hemoglobin levels were already borderline on Monday and we postponed it until today. She was showing all the signs and we fully expected the transfusion, but for some reason when the doctor said Haylie needed it today, tears just started rolling down her face. Poor thing. Then the throwing up started. We couldn’t get a throw up bag fast enough so the nurse grabbed the gift bag they had given her to celebrate her last shots. 🙈 She later told me she just wanted today to be perfect so she could celebrate. She learned an important lesson today. Life doesn’t always go as planned. You have to not let setbacks get you down, just keep moving forward and find the good in things.

While we couldn’t go out to eat at a restaurant today because of her levels, we did get her favorite dish at The CheeseCake Factory to go and celebrated at the house. All in all, I would consider today a pretty good day. We are one big step closer to our goal...being cancer free. We are so thankful to the many people who have helped us along the way.
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Haylie video

#HealingForHaylie-Post 80

Haylie update- Feb 11

We are so close now. One more Erwinaze chemo shot on Wednesday and we are done with delayed intensification! We got Haylie’s blood counts back and the good news is her body has started to make platelets again. Yay! Her platelets were at 94 today so no platelet transfusion needed. She has always started making platelets earlier than when the doctors have said her body would. However her hemoglobin has fallen and is at 8.5, which is borderline. He doctor wanted to go ahead and give her a blood transfusion today, but Haylie was adamant that she didn’t need one and her body will make more by Wednesday. We agreed to wait so she won’t have to get her port accessed. So no blood transfusion today since she will be checked again on Wednesday.

Unfortunately her ANC, which is her immunity indicator, has fallen down to 20. 😬😳. We will continue to wear her mask and be secluded from everyone until it comes back up. I think it should start making its comeback any day now.

We are so close to the end of this last rough phase we can almost touch the finish line. The countdown has begun, and the celebration plans are taking place. She just took her 2 chemo shots, so now we wait for an hour to make sure there is no reaction and then we get to go home. She is using this time to work on homework and I had some time to write this post so it’s been a good day. I just hope I can get her to eat something today. She has been so nauseous and thrown up so many times over the weekend. She has barely eaten anything for the last 3 days. Looks like I’ll be stopping at the grocery store to get some steaks for tonight since she always eats that. Doctors said she needed to eat food high in protein and fat so I think steak is the perfect meal to get her levels up. 😁 
 
On a fun note, we ran into one of Haylie’s friends from cancer camp this morning. It’s always fun to see friends. When her levels come back up, she is looking forward to seeing many more friends soon.
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Getting her shots

Working on schoolwork

Her friend Toni

Happy girl!!

#HealingForHaylie-Post 79

Haylie update - Feb 4

We had an eventful weekend. We had Brennen’s last regular season basketball game on Saturday and we won! Brennen had another good game and scored 8 points. Playoffs start next week. Haylie was able to make it to 2 games this season, but honestly I don’t think she misses going that much.
We ended up going out to Jason’s Deli on Saturday night, mainly because Haylie was begging to get out of the house and I had nothing to cook. Her ANC surprised us by being 750 on Friday so we figured it was still in the ok range, so why not!

Sunday we got steaks and planned on just watching the super bowl at home away from any potential germs. Haylie was quite upset at this prospect and begged to go to a party. We eventually gave in and figured we would stay for 30 mins. Well...we ended up staying the whole time. Haylie had a blast. There were 3 other girls her age there that go to the same middle school she will attend. Bless her heart, she has missed socializing with friends so much. It was certainly against my better judgment to go, but I felt so bad for her to be secluded for so long. She was like a whole new kid. I saw her run by, and run up the stairs! I haven’t seen her do that in so very long. I couldn’t believe it. She said she had the most fun that she has had in months. On the way home she told me that she did a front handspring on the trampoline. 😳. What! I later found out that she had done several and even taught one of the other girls how to do one. Oh my! She did have fun. Pretty much as soon as we got home, she completely crashed. We ended up having a very tough night because she was in a lot of pain, but I finally got her to sleep around 1:30am.

Apparently, she had used all of her energy quota for a couple of days. I ended up having to carry her up and down the stairs this morning. She said she didn’t care, it was totally worth it. Ha.

We had to come to the hospital again today for her next Erwinaze chemo shot. They checked blood counts at intake and I got quite a shock. Her ANC has fallen to 80. 😬. Oh goodness, she basically has no immunity right now and I had her at a super bowl party last night. 🤦🏽‍♀️. She still claims it was worth it. The doctor did give her strick instructions for no more trampoline until she is finished with this phase of treatment and her counts come back. Her hemoglobin was at 9.1 so that was good news, but her platelets were only at 18 so we have to get another platelet transfusion today before she can get her chemo shots.

Unfortunately, there are no available platelets on hand at this hospital so we have been waiting for about 3 hours for platelets to be sent over. Once we get the platelets, she can have her chemo shot and then we have to wait another hour to make sure she doesn’t have a reaction. The nurse did tell us that we could go ahead and get the chemo shots before the platelets to speed things up, but they would have to apply heavy pressure and compression in order to avoid her getting a hematoma. Uh..no thank you. We will wait because I certainly don’t want any more complications right now.

The platelets finally arrived and she is currently getting her transfusion now. Yay! We are praying she doesn’t have a reaction this time. She is feeling much better. It probably has something to do with the 2 hour nap she got after they gave her Benadryl as a precaution before her transfusion today.

You can probably tell I’ve had to write this post in sections. She just finished her platelet transfusion and all went well! No reaction, praise Jesus! She also got her chemo shots and took them like a champ. We just have to wait an hour and we can go home. Hopefully this will be the last transfusion that she will need. Even though we had to wait, we are again so thankful for the kind person that donated platelets. It made Haylie’s chemo treatment possible today. Bless everyone who donates blood and platelets. You may never know the impact it has on someone else’s life. I see the many faces that it helps at this one hospital. Thank you, thank you, thank you.

On another note, Haylie is currently in the lead for her hair growth competition with the chia pet. 🤗🎉
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#HealingForHaylie-Post 78

Haylie update: Jan 29

It’s been a few weeks since my last Haylie update so I figured it was time to get another one out. This phase has not been an easy one, but I feel she has handled it well. We are thankful that we haven’t had any ER or hospital stays, so it’s definitely in the win column.

We have also had several celebrations of the “last” of certain types of chemo. She has had 2 spinal taps in the last 2 weeks which weren’t fun, but she did have her last dose of cyclophosphamide. Yay! I also have been required to give her chemo pills and chemo shots at home and we had her last cytrabine shot on Sunday! Another win!

Unfortunately these types of chemo have been really hard on her body. She has completely lost all of her hair...again, and her levels are crashing. Her doctor told us to expect that she will need another blood transfusion at her next chemo appointment on Friday. However, I don’t think we are going to make it until Friday. I had to call the hospital today because of her terrible belly pains and headaches. The headaches and extreme exhaustion have been tell tell signs of her needing another blood transfusion in the past. I’m finally beginning to read the signs. The doctor wants to check her levels and they are suspecting she will need a transfusion tomorrow, so we are headed back to the hospital in the morning. Bummer.

Because she basically has no immunity right now, she has been secluded to the house. I know she really wants to get out and see friends, but with it being cold and flu season, we just can’t take the risk. She has had such a positive outlook on things in spite of all the obstacles she has had to overcome lately. I think she has watched enough Netflix and on demand shows to last at least a year. She also has become extremely talented in candy crush and is already in the 900 levels. 😳 I would have totally objected to this a year ago, but, that is all she has the energy for some days, so I will just let it slide.

We are so excited that we saw what we think are a few hair spouts starting to grow again! Another huge win! We decided to plant a chia pet and see who can grow it faster, Haylie or the Chia puppy. Ha. We have always loved a little friendly competition. 😉 

I’m excited that we can see the light at the end of the tunnel. We start her Erwinaze shots on Friday so we will have to go back to the hospital 3 times a week, but our last chemo treatment for delayed intensification will be on Feb 13!!! She is almost to maintenance. Hallelujah!

I have to admit that I thought we would have all rainbows and sunshine when we hit maintenance but she will still have some challenges to overcome. Anytime she spikes a fever, we will be required to head to the ER for the next 3 years. The hardest part for us is that her port will have to remain in her for 3 years and she can’t get in lake water for ...3 YEARS. I realized that she will be in high school before she can ski or tube again. 😢The good news is we will eventually get to go to once a month appointments! How exciting. I may actually get my house clean and thank you’s written.

Thank you everyone for your love, prayers and support. We can see God’s goodness and faithfulness through this all.
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