Journal entry by Erin Parnell —
Hey everyone-
Wanted to just give an update to let you know how Ryan's been doing the past few weeks. We got good news after her last infusion in February that her numbers were coming down so we were able to slightly wean the amount of prednisone she's been getting, which was a relief. Its a tough drug and its been effecting her moods and appetite as we knew it would. She's has some meltdowns where she will just cry or get angry for no reason and we have to just remember where it is coming from. It definitely just flat out sucks there's no nice way to put it, but we know little by little she'll be off this drug soon enough. The positive side to being on this medication along with her IVIG and methotrexate is that her mobility is back to 100% as well as her energy level. On occasion she'll ask her gym teacher for a break and on occasion she'll want to miss a dance class, but overall she is physically feeling good!
She had her second infusion last week and it was a tougher day for her. Since she is getting older, we talk a lot more about these days and she is really able to verbalize how she feels. She told her brother she was scared and he gave her a big hug and one of her favorite stuffed animals to sleep with. When she went to the hospital, her vein just didn't cooperate and it collapsed so unfortunately they had to remove the IV and put it in her right arm. In the past there's been times where she would have to get stuck 2-3 times and it was THE WORST. This time they had to insert it in her right arm which she was mad about because she couldn't color most of day which is always her favorite thing to do during her treatments. In the past we discussed her getting a port inserted to avoid all of these pokes and vein issues, but the risks definitely outweigh the benefits in her situation.
Her Child Life Specialist came in with some barbies and play doh and for the most part she was happy. The GREAT news was she had zero side effects after this treatment and it was a HUGE relief. We are always on pins and needles after these treatments because in the past they would make her so sick, but this time she really felt great.
We feel overall we are moving in the right direction and just pray that this flare was just a little blip. We are still focused on one day her being in full remission and being off all her meds. Please continue to keep her in your thoughts and prayers and we appreciate all the love you've been sending her way. She is getting her next infusion mid-April so we'll send another update around then!
Wanted to just give an update to let you know how Ryan's been doing the past few weeks. We got good news after her last infusion in February that her numbers were coming down so we were able to slightly wean the amount of prednisone she's been getting, which was a relief. Its a tough drug and its been effecting her moods and appetite as we knew it would. She's has some meltdowns where she will just cry or get angry for no reason and we have to just remember where it is coming from. It definitely just flat out sucks there's no nice way to put it, but we know little by little she'll be off this drug soon enough. The positive side to being on this medication along with her IVIG and methotrexate is that her mobility is back to 100% as well as her energy level. On occasion she'll ask her gym teacher for a break and on occasion she'll want to miss a dance class, but overall she is physically feeling good!
She had her second infusion last week and it was a tougher day for her. Since she is getting older, we talk a lot more about these days and she is really able to verbalize how she feels. She told her brother she was scared and he gave her a big hug and one of her favorite stuffed animals to sleep with. When she went to the hospital, her vein just didn't cooperate and it collapsed so unfortunately they had to remove the IV and put it in her right arm. In the past there's been times where she would have to get stuck 2-3 times and it was THE WORST. This time they had to insert it in her right arm which she was mad about because she couldn't color most of day which is always her favorite thing to do during her treatments. In the past we discussed her getting a port inserted to avoid all of these pokes and vein issues, but the risks definitely outweigh the benefits in her situation.
Her Child Life Specialist came in with some barbies and play doh and for the most part she was happy. The GREAT news was she had zero side effects after this treatment and it was a HUGE relief. We are always on pins and needles after these treatments because in the past they would make her so sick, but this time she really felt great.
We feel overall we are moving in the right direction and just pray that this flare was just a little blip. We are still focused on one day her being in full remission and being off all her meds. Please continue to keep her in your thoughts and prayers and we appreciate all the love you've been sending her way. She is getting her next infusion mid-April so we'll send another update around then!
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