We've had many blessings over the past few weeks. Saturday May 4th, Kiara was honored at a Touch a truck event in Martinsville that had an abundance of emergency vehicles and other modes of transportation.  She is delighted with the Deputy uniform they also gifted her. It is amazing and humbling that my dozing off the road brought about such a gift. The beautiful part is that the department wants to make it a yearly event and honor a different child each year! God works in mysterious ways.

   Then on Monday, May 6th Kiara's port was checked at the clinic and we are so grateful it flipped back and was able to be accessed. If it didn't then she likely would've had to have surgery tonrevise it again. I think it is still moving at times which causes Kiara's chest to be sore. Kiara then saw the pulmonalogist and a respiratory therapist. She will meet with aerodigestive team (ENT, pulmonalogist, GI & speech) in June to evaluate if there are any underlying issues to be contributing to her dips in oxygen saturation at times. I have continued some changes with Kiara's diet but am working on scheduling a second swallow study that will be more through than the first was to answer other questions. 

     Tues, May 7th Kiara began phase 5 of long term maintenance (LTM) with spinal tap (check for cancer cells and dose of chemo in spine), IV vincristine & steroid pulse. She also had an IVIG infusion because her numbers had been trending down in addition to recent hospital stays.  She was also on antibiotics as precautionary measure from April hospital stay as well as had finished a different steroid to try to help her lungs.  The poor girl had thrush with mouth sores from everything. 

    Kiara has had the longest bout of mouth sores yet with blisters across her lips. She has always gotten the first sign of sores around her mouth and this is a bit more extreme. While the treatment we give her hasn't eliminated them, it is keeping them in check it seems. If we miss a dose, it does worsen. It does hurt my heart to see her wake up with dried blood around her mouth from the blisters overnight. During the day we can keep it protected with lanolin. She really is a trooper and usually only comments if she bumps it or eats something that burns it. 

     While Kiara seems to be staying healthy overall, her oxygen while sleeping has varied quite a bit. At home, she is on a hospital grade pulse ox monitor when she sleeps and we have an oxygen converter to help meet any oxygen needs she may have. She goes from needing no assistance to stay at 92% or above to randomly needing more than the 5L the machine we have can do (that's not as often thankfully). Fortunately,  she needs little to no oxygen most nights! 

     Kiara's labs were also checked to see how she is processing the chemotherapy drugs. Her levels were high and the oncologist said that both her weekly and daily chemotherapy could be decreased! That was just started today, May 23rd. She will still be above the 100% she was at most of LTM but a reduction from the 125% she was increased to in Jan (weekly dose) & March (daily dose). I think that should help her mouth heal and with her oxygen issues. 

     We had other happy events too. Kiara turned 5 on May 9th. She asked for chocolate Bluey cake and we went to Holiday world to celebrate with the whole family. We enjoyed several different mother's day events with family, celebrated Pentecost and end of many school year groups for the summer. Kiara missed her ballet recital performance because we didn't get back from her clinic visit but she enjoyed the class. I'm honestly not sure she would have participated 😄🤪 She seems to get shy lately in the spotlight. Finally we are looking forward to attending a retreat this summer for families with a child undergoing cancer treatment.  With spending 2 weeks inpatient throughout April, I think it will be so helpful to just focus on being together. God has been abundant in showering us with blessings and we are grateful & pray for all those he uses to do so!

   Blessed Chiara Badano; pray for us.

Blessed Fr. Michael McGivney: pray for us.

Blessed Carlos Acutis: pray for us.

Our Lady of Sorrows: pray for us.