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.
#HealingForHaylie
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.
#HealingForHaylie
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