The Feed

Good morning all. These last few weeks since the last post have been uneventful which is a good thing. Kendall has been feeling really good and didn't need to see any doctor in the past few weeks. The last result of the EBV virus I posted on Sept 5th (5200) was the last one that was drawn. Since she doesn't have any viral symptoms they gave her a break from the every 2 week blood work and she will have it drawn next week. Upcoming: -September 29th is the scheduled heart cath

Greetings everyone. I have not posted anything since July!! Yikes... Not posting is actually a good thing because there wasn't any bad news report Updates: EBV levels -7/11 11,800, 7/14 5,500, 7/29 2900, 8/11 3800, 8/26 5200 So the levels fluctuate because she never had EBV as a child. The oncologist said that is normal because of the meds she is on to suppress her immune system (which also protects her heart from rejecting). -That answered my questions as to why it is ne

I wanted to send the recap of June-July's events so far: June 24 Ultrasound of lymph nodes (neck and abdomen) --results came back that the lymph nodes were not enlarged. Woot woot The plan PET scan for 7/7/26 was canceled and rescheduled for 8/6/26. She will continue to get blood drawn to check EBV levels every 2 weeks EBV levels: EBV levels (7/1 11,800 and 7/14 5500). The numbers are coming down 7/14/26. Appointment with gynecologist the same day- Appointment went well. No

Very quick update June 26th Kendall had the cardiac cath. After the procedure the cardiologist came in and said the pressures in the right side of heart were higher than they've ever been. The explanation to us was that the right side of her heart is very stiff and it takes extra effort to pump blood to it because she does not have a left lung to help the pressure to be normal. She was discharged about 3 hours after the cath and the doctors told us to stay close to U of M or

Good evening. Hope everyone is doing well. Here are the latest updates JUNE 18 ENT. This was a 6 month checkup appointment. He did not put the scope down her throat this time( She smiled big when the doctor said that). The Dr went over some details from when Kendall saw him 6 months ago. He doesn't want to do an airway procedure because her vocal cords could be damaged and/or there would be a lot of swelling causing her not to breathe and require a tracheostomy that would b

Today was the neurology testing at a U of M center near the hospital. We were there from 8am-230pm. We were able to talk to the psychologist for about an hour so she could gather information and get more of Kendall's history before she met her. Kendall was with the psychology tech(don't know if that is the right title) the majority of the day. There were literally hours worth of paperwork and surveys we had to fill out while Kendall was being tested so that made the time in t

Hello everyone. I know the last post was long with all of the upcoming appointments so I will try to break them down in smaller posts. The results of the June 3rd Epstein Barr Virus was higher-10,100(from 243, and 4300). She does not have any obvious symptoms that would indicate why her number is that high. No cold, fever, loss of appetite etc.....The plan is to see the oncologist on June18th along with an ENT appointment. -She will also have a PET scan appointment on July 7t

Time flies. Especially when things are not only happening to you but your family and friends also. I didn't look back at the last post so bear with me if this is a repeat of anything. April 17th--Kendall had an appointment with Dr McGrath who is her hematologist/oncologist. Basically she is the specialist that has been following Kendall regarding her enlarged spleen. --On the physical assessment Kendall did not have any signs of pain. The results of the CT scan of her spleen

Hello everyone. I can't believe it is April already. Sydney turned 32 last week and Kendall will be 17 yrs old on April 17th!!!!! She absolutely loves singing and karaoke(this is when she is the happiest). We have planned a karaoke party for her on Saturday. For now keeping it as a small group due to her immune system. She had a cardiology appointment today. EKG and ECHO(ultrasound of the heart) was stable. Also had a ton of blood drawn for cardiology and oncology. ( I coun

Quick update: CT scan done on Mar17th Scheduled appointment with Oncologist after CT scan went well. No changes in medications. Kendall has had cold(stuffy/runny nose and cough) for a week or so. No fevers though and she feels good. --- -However the appointment on the 20th with the spleen specialist(hematologist) to go over results was canceled and rescheduled until next month( not our doing). The doctor needed to reschedule until April 17th) her 17th birthday. It seriously b

Hello everyone. Kendall has had a few appointments since my last post. Heart cath was done on February 18th. They went through the right carotid artery on the right side of her neck for the cath. The pressure(s) in her heart are stable and the ECHO looked good. On Friday February 20th the transplant nurse practitioner called and said the results of biopsy came back "mild" rejection. She said they really don't know if the rejection is because the heart is healing from the last

On my last post I stated Kendall had a heart catheter procedure on Friday January 16th. On Tuesday January 20th I received a call from the transplant team stating there was some moderate rejection cells in the heart biopsy and they wanted her to be admitted into the hospital ASAP to begin a steroid regimen. It's crazy because there were no clues looking at her to tell what was going on in her body. So we got to the ER around 3p and this started Day 1 of a 3 day IV steroid tre

On December 10th Kendall was diagnosed with Influenza A. She was immediately put on tamiflu for 5 days. She had a mild case thank God. Then Quentin tested + for influenza A on January 7th so the transplant team wanted Kendall treated again because of exposure. This time she had to be on tamiflu for 10. days On December 17th we went on our first vacation since the transplant. We went to Nashville Tennessee for Quentin's 21st birthday. A good time was had by all. Kendall had so

October 11th--. Our family met with Brady's parents, Allisun and Donavon Caproon via Zoom. We greeted each other with smiles and introductions. From there the conversation just flowed. We didn't have a Q & A with a list of questions because we wanted it to be genuine and not scripted. I asked Allisun to talk about Brady and share some things she had already told me and add anything else she wanted us to know. After that, we asked them questions like: what were Brady's favori

We have been in contact with the donors family. They are such beautiful people inside and out. Kendall's heart donor's name is Brady Caproon. Myself and Brady's mom have been texting and writing letters to each other back and forth since last year. This was definitely an answered prayer, that the donor's family would want to know us. I remember the first letter I received from Allisun very vividly. When Sydney opened the envelope to start reading the letter to us, there was a