I feel like a new me with CBD

Since my last post, I have found a new self-treatment for many of my issues. It is called cannabidiol (CBD) oil. When visiting my sister Robin, I called the distributor who her husband got it from to see if there was any chance of this oil helping me. She recommended I start on the highest dosage for the multitude of problems I have, but I decided to go with a medium dose, 500mg twice a day, so that if my problems worsened, I had another level to go to. I could be the spokesperson for this CBD oil as it has helped me tremendously.

First of all, I had a headache that lasted from February through the end of June and I was very concerned that the brain tumor I had was growing. I ended up getting a full set of MRI scans of my head and spine and learned everything was unchanged. Then, about 10 days after starting the oil, I realized I hadn't had a headache in a couple days. At first I thought no way, it had to be coincidental, but then it caused my pain to decrease where I didn't feel I even needed any pain pills any longer. Since that point, I have stopped taking pain medication altogether. It's so amazing. I even had a recurring pain in my back that went away when I took the oil.

I was hoping that my glaucoma pressure would also go down as it has not been normal in about 10 years. I went to see the eye doctor a week ago and it is now normal, but he still wants me to continue the prescribed drops a little bit longer to make sure it remains that way. Unfortunately, when I asked what the odds are of ever seeing again, he said there would be a 0% chance in my lifetime with technology as it is now, so it would have to be miracle from above.

Another incredible effect has been my blood pressure. Most kidney patients have chronic hypertension, but since starting CBD, my pressure has significantly dropped into the normal range. About a month ago the doctor cut my blood pressure pill dose in half, and today she stopped it altogether. I'm going to monitor it for two weeks to make sure it doesn't rebound up again.

As for the ultrasound for my thyroid gland, I was found to have two cysts and they are both cystic and require no treatment, which was a relief. My mammogram was perfect.

I had a six-month follow-up MRI of my abdomen and chest x-ray to make sure no cancer had spread when they removed my left kidney (there was cancer in the fat around it prior to removal), and everything was fine. I am now at 18 months but I'll need scans every six months for five years because I'm still at high risk for metastasis.

I need to do a colonoscopy on the 24th because I'm having a lot of digestive issues and lost six pounds, and I don't know why I'm losing weight. My pancreatic cysts continue to enlarge and sometimes go back down a little on their own, but I will definitely remove the fluid the next time they get big because they cause pressure.

My skin still has the crawling feeling and I'm taking new medication for it, but it remains bumpy and discolored, especially on my arms. I saw the skin doctor about three weeks ago and they did three biopsies, but I was happy to know this was the first time it did not require Mohs surgery. So, the CBD oil is also a possible anti-cancer treatment. It's been so good for me that people see my results and 20 of my friends/family have now ordered the oil.

Other than that, I've had quite a bit of insomnia, and fatigue as a result. Perhaps it has some thing to do with menopause.

On a better note, I've had an awesome summer. I visited my sister Robin in Florida from May 15 through the beginning of June, where I was able to see her daughter Taylor graduate from high school. She is now in college in Pennsylvania.

Although the weather was very uncooperative due to rain, we were all able to enjoy our time together. I learned some new dance moves from the girls - the dab and the nae-nae - and I learned how to twerk. It was a lot of fun seeing how these kids learned to rap.

We went to several restaurants, one in the middle of the woods and surrounded by a waterway with boats going by while you are eating. It was like I was on safari in the middle of the wildlife. We went to Sharky's, named because the pier connected to the restaurant happens to be the #1 place to catch sharks in Florida. After eating we walked out to talk to some men about how they really catch shark off of the pier. They're up about three-stories high and they said when they feel one, they pull it in and have a net at the bottom that catches it, and they drag it to shore. They catch about 3-4 sharks a day off this pier, which freaks me out because I used to swim at this beach. Now with the red tide, I hear this beach has about three dead sharks washing up on shore daily, among other fish.

My sister also took me to a drum circle, which is basically a large group of people, most not knowing each other, who come together a couple times a week on the beach and play their drums. Once one starts a rhythm, the next joins in and on and on, and eventually it's almost as if they planned it to have a certain rhythm. People dance like freedom dancers, spinning with their arms out. Then, at sundown, they play conch shells for about five minutes as the sun sets behind the water. Without sight, it felt like a very spiritually connected moment.

We went to the beach one day for about 20 minutes. I never took off my cover-up because a big black cloud opened up above us and ruined my only day at the beach. I think I will wait for rainy season to end before I return.

Next, I traveled to my brother Jeff's home in Golden, CO, outside of Boulder, and was there for 10 days. What a totally different experience it was after Florida. We were out every day canoeing, hiking, rafting, picnicking, touring Boulder and Denver, and saw many street musicians and homeless people, while absorbing the smell of pot. The people there seemed very into nature and very outdoorsy. There is just so much wildlife everywhere.

I had a blast with my nieces Emma (14) and Makena (8) and my nephew Anthony (16), and finally had some great visiting time with my brother. Sheila joined us for the last five days and we all went whitewater rafting and canoeing, hiked to a waterfall, shopped, and enjoyed a carriage ride and hotel night in downtown Boulder. Cindy was traveling with some friends but she was able to spend one day with us.

I realized how much Emma really missed Alyssa as she was displayed all over her room and she still sleeps with the blanket Alyssa gave her and keeps in touch with all Alyssa's friends on Instagram. I mentioned we were going to be having a memorial party for Alyssa and I would love to have her come and meet her friends in person. She was so ecstatic that her parents said yes, so she came in to visit and the whole week other than the party was spent with all of Alyssa's besties. I even took her to Pink, Alyssa's favorite store, and sent a package of many of Alyssa's clothes to her.

The thank-you/memorial party for Alyssa was the third week of July. Steve rented the tent, had it catered, invited all our neighbors and friends, and friends from school and anyone else who knew Alyssa well, and we had a great day. She hopefully was looking down to watch how many people came to celebrate her. In addition, the recipient of her lungs, Cindy (and her husband Carl) came in and all the kids were so excited to meet and hug her - it was as if she were the guest of honor. She is still doing great and now has Alyssa's energy. Unfortunately, I never heard back from the liver or cornea recipients after writing to them, yet I'm still hopeful one day they will reach out.

I feel this has been one of my best summers in years, except for all the grief I have over Alyssa. I'm generally feeling much better and taking fewer pills, which makes me feel clear-minded again. I have tried to be more active and have taken many walks at Independence Grove. I have been to Ravinia with my neighbors to celebrate a birthday and we saw some oldies - the Righteous Brothers, the Beach Boys, and a guest appearance by John Stamos - and we all had a blast eating, drinking, and singing along. Last night I saw Tony Bennett at Ravinia and his voice sounds just as good as it did 30-40 years ago. On Sept. 14 I'll see the Gypsy Kings, and later in October UB40. I went to Arlington Park Race Track last weekend and was finally a winner - not a big winner of course but I came home with money. Lori Pritchett and Dave were also winners that day.

I recently met up with old friends from Lutheran General Hospital. I stopped working there in '08 or '09 and rarely talked with them until now. We had a private room for four hours for lunch in town, and there was so much to talk about from our days of working together - we laughed so hard. Our next group will be even larger as others heard about our get-together and want to come. That will be in late October.

From 9/30-10/7 I will be visiting with my bestie and staying at a beachfront condo near Clearwater. Hopefully the red tide will not have moved that far north because if so, due my immunosuppression, I will have to back out. I really hope that won't happen.

Still trying to get a group of college friends together as everyone has been busy with one thing or another as their kids get older. Some are grandmas, one has a daughter who just got married, and most of my friends work. You'd think life would get easier but it just gets busier.

I did see my relatives twice over the summer yet the only one who has come to my home is my Aunt Mary. Uncle Lou, who is now 88, finally got a set of hearing aids and is doing well after his valve replacement. My Aunt Winnie, on the other hand, lives with chronic pain and sciatica and recently was in the hospital for six days because her kidney levels were very elevated. Upon doing MRI scans, they found small cysts. They will repeat the scan in six months rather than doing anything at the present time.

I did the 23andMe DNA test to figure out my heritage and I'm waiting to get my report. I also did the health portion as they will look at my DNA among others in my ancestry to find common health problems. It appears two of my dad's siblings (out of five) had VHL, and possibly one more yet no autopsy was done. One died at age 61 of VHL, and the other, an aunt, was 67 when she was diagnosed with it and is now about 75. Her tumors are unchanged and she has not required surgery her entire life. The only areas affected are her brain and one kidney tumor. This goes to show not everybody gets the same strain of VHL. My family, though, was hit extremely hard, and no one got it to the degree that I have.

Aunt Rita, my dad's closest sister when growing up, called me several weeks ago and we talked for 4.5 hours. She and her husband used to double date with my mom and dad. She told me my dad was always in trouble trying to do pranks and joke around but he was very brilliant. He graduated high school in three years and went on to be an engineer. He and my mother had four kids prior to his death, which, sadly enough, would not have even occurred if he was 20 years older because they had no steroids available at that time to treat brain swelling.

We also talked about how my mom never spoke of my dad after he died, which is why I know very little about him. She got remarried 1.5 years later and I almost never heard his name again. We rarely got together with his side of the family and my mother always said they wanted nothing to do with us because we carried the disease. But, it turns out they thought she moved on in her life and wanted to break ties with them. So, I missed out on getting to know a lot of my cousins, aunts, and uncles. I'm hoping to get together this fall to hear more family stories, and they are putting together a family tree for that side of the family.

Tyler is still working at the gaming company and absolutely loves his job. He is still with his girlfriend Lindsey and I am so blessed because they include me a lot when they do things, and now with Alyssa gone he is my everything. Steve is still with his same sales company yet his territory will change in October from WI and MN to WI and Chicago. In the last three years he put 130,000 miles on his car, so it is a good thing that he won't have to drive as far. He continues to have the most difficulty with the loss of Alyssa, though.

I look forward to my grief group restarting next month and I'm seeing a therapist and working through a lifetime a how my health has affected me and others around me and learning how to possibly deal better with that.

In my last grief group session, I was telling them how hard it was to be blind and not able to see Alyssa in photos, videos, etc., but every night I dream of her. She is always with all of my family who has passed away years ago, yet I'm there watching it all, too, and occasionally Tyler and my brother Jeff are there. In my dreams, everybody looks great, and Alyssa looks about 9 or 10 because I've never seen her older than that. Maybe that's why I like to sleep.

A few nights ago I had a dream my mom knocked and opened the door and said she had a surprise for me - it was Alyssa. She said Alyssa had to get away for a while from the fighting but she's not really dead. It was like she never left, and it was so emotional. I woke up because my phone rang but I wanted more. The grief group told me they think I lost my earthly vision but I have heavenly vision because nobody they know dreams like I do.

I'm sad to see the weather changing and Tyler tells me the leaves are changing, too. I hope this is not a sign of an early fall because I hate winter. My sister is working now so visiting her in Florida will be harder because I'd mostly be home alone if I stayed with her.

Nevertheless, now that I'm feeling better, I'm planning to start enjoying my life more and traveling more. I just feel like this is the time.

Hoping that you all had as nice of a summer as I did. I have to say it's hard for me to see all of you sending your kids to school, and I think of Alyssa when I hear the bus go by, but I'm very happy for you. Wonder if CBD will work for grief?

Hoping we have a late fall and very mild winter, and always hoping to see all my friends, including those who are far away.

I Know Alyssa Has Earned Her Wings

"Sprinter" (spring/winter) has finally ended and it seems spring is finally here.  On top of having all of the additional stress this past year, I think I may have had a touch of seasonal affective disorder (SAD), as today was beautiful, sunny and 60 degrees, and I already feel a change mentally and physically - it totally makes me feel so much better.

These last few months have been exciting as I heard back from the recipient of Alyssa's lungs and her name is Cindy. We set up a meeting date in February where she and her husband Carl came over for lunch with our family. It was such an emotional meeting and I instantly felt that between hearing her letters and meeting her, that she was without a doubt the person who was supposed to receive these lungs.

Cindy & Carl

Coincidentally, she and Carl lived in Libertyville for 40 years. He was a PE teacher at Libertyville High School, where our kids went, and also coached three sports. He still comes to town and recognizes many of his old students, and still gets his hair cut at the Libertyville barber shop.

Even crazier, her husband and I have a mutual friend named Lester who owns Sports 11, a shop where everybody gets all their Libertyville HS sports equipment and t-shirts. Carl and Cindy have known Lester and his wife for the past 30+ years. The coincidence is when Alyssa was a toddler, she developed a liking for Lester. We would visit him at least once a week, and he'd treat her like his little grandchild and give her a soccer ball, t-shirt, etc. When she was age 4, 5, and 6, our family was invited to Austin (a restaurant in town) where Lester rented out the entire facility and paid for all the food, drinks, prizes, etc. for the friends who came to join him. Those three years that we were there, so were Carl and Cindy. We were probably sitting no more than 2 or 3 tables apart.

I find it so amazing when I think that one year after the third party we attended, Cindy was just starting to feel a bit ill with her respiratory condition. Who would have ever guessed it would be my daughter who would save her life. After I met her, Robin posted the whole story on Facebook, including Cindy's 180-degree turn that allowed her to meet her eight grandchildren. She was never able to meet them before because she was at high-risk for developing illness and was house-bound on oxygen for eight years. During our visit, we listened to her lungs through a stethoscope, and because Cindy is about the same size as Alyssa was, when we hugged her goodbye, it was as if we were hugging Alyssa goodbye.

I have yet to hear back from the recipient of Alyssa's liver but recently got a call from the eye bank. They were able to use both of her corneas for transplant. The young girl who received one of them lives about an hour south of me. They believe she was totally blind and now has the ability to see. The gentleman who received the other cornea was 66 years old and from Chicago. I would like to meet both of them. This week I will be writing them and signing a waiver so if they want to contact me, the process won't take so long. Uniting with The Gift of Life (organ donation) recipients took a whole year.

Sadly enough, Alyssa's best match of all was a woman from NY in her 50s, who was waiting for a heart while on a heart/lung machine. When she got it, everything took fine, but she developed an infection with all the autoimmune drugs you need to take and the doctors were not able to get rid of it. She unfortunately passed away 3.5 months later. I wanted to meet her so bad. Also, Alyssa's intestines were donated to a young man but rejected immediately so they put him back on the list. Before this, I didn't even know they could transplant intestines.

February was a very blue month as it was the anniversary of Alyssa's death on the 27th, although we felt it was really the 25th when she went to Condell, because within the first five hours, she was already brain dead.

On the 27th, as a family, we planned to go to the school after dismissal to meet at her swing and release balloons, and then to Culver's in the evening, which was the place she frequented with friends after a lot of her dance events and other special occasions. When we got there, there were shifts of kids showing up - about 40 in all - who were throwing balloons up and sharing stories about Alyssa. I felt like she had such close friends, I wanted to give them something as a reminder of things they used to do together. One being, we used to always make pretzel rings with Hershey's Kisses and M&Ms, and she also found it so much fun to mix regular Jelly Bellies with BeanBoozled Jelly Bellies that taste silly like grass, toothpaste, dirty socks, dog food, etc. So I made up goodie bags for all the kids. They each took turns eating one Jelly Belly and it was funny to see if it was a good one or bad one.

If the month wasn't blue enough already, it became worse when I found out I needed Mohs surgery on the top of my foot and on my bottom lip. I was shocked to see that I lost 2/3 of my bottom lip to cancer, and then had to go to a plastic surgeon who pulled the inner lining of my lip over the top and sutured it down so that I wouldn't have an inverted lip when it healed. In addition, I had a deep, silver-dollar-sized Mohs surgery on the top of my foot. The plastic surgeon closed it with an incision from my ankle to my middle toe so he could pull my skin from every direction and close up that hole. I was told not to walk on it for three weeks because if it tore open, I would have needed a graft on the top of my foot. I must say, after all the pain in my lip and foot, both have healed so well that most people can't even tell I had the surgery.

Speaking of health, I finally got a reprieve where I don't need to see my skin doctor for three months, my eye doctor for three months, my kidney doctor for three months, and my neurologist for about six months. Here's the summary:

Kidney: My creatinine is 1.6 (better than last time) and I've had just one more infection.

Eye: The doctor decided not to do anything - no injection or draining - basically because he thinks I'm done.

Neurologically: They noticed I'm a little more off balance and I've had three tumors get slightly bigger in my head, but if they wanted to do surgery, they wouldn't know which of the three to take, so instead they will wait and do a scan in November unless more symptoms appear before then.

Headaches: I have had headaches now for about six weeks - I can't get rid of them. They told me that looking at my brain, I'm a person who is probably going to have headaches forever because of all the surgeries, the few tumors still in there, and pressure changes from the weather and fluid retention. Now that spring is here, I'm hoping it gets better.

Skin: They started me on a drug to decrease sensation to my nerve endings because when I discuss my itching and crawling feeling under my skin, they feel it's related to my nerves. It has been working so far. It comes with a lot of side effects, the biggest one being fatigue, but I'd rather be more tired than having to deal with scratching all over. I'm taking fewer pills now, too.

Pancreas: My pancreas fluid is coming back and I'll need to get that drained again. I wish they could just seal it off.

Thyroid: On Wednesday I'm getting an ultrasound on my thyroid nodule, which I've had for the last four months but was not told about it until last week. Say your prayers and wish me luck! There are no symptoms with these and 80% of them are benign. I'll also get a mammogram that day.

Since my niece Taylor is graduating high school on May 17, I thought I deserved a trip to Florida to see that. I'm leaving May 13th and returning on the 27th. I'm looking forward to the warm weather and getting to visit with Robin and her family again.

My cousin Wendy had her baby girl who is healthy and I'm excited to meet her. She is probably six weeks old now.

My uncle Lou, who is 88 and was given a year to live 2.5 years ago, suddenly gained about 25 pounds and suffered shortness of breath and was rushed to the hospital, where he stayed for 22 days. They did surgery on his heart and put in a pacemaker, and now he can walk .5 mile per day with no problem. He and Winnie will celebrate their 60th wedding anniversary in June with a big family party.

As Lou was checking out of the hospital, my cousin Stacey had a gallbladder attack and stayed in the hospital for several days after they removed it. A week after discharge, she found herself having the same pain and she ended up having gallstones in her bile duct. Now she's fine and back to work. It was a crazy month for that side of the family.

Also during the winter months, we attended the first annual reception for donors and recipients of kidney transplants held at the University of Chicago. All the patients who had received a kidney in the past 1.5 years were invited to the luncheon, as well as their donors, surgeons, nurses, post-transplant teams, etc. There were well over 100 people. My donor Maureen was asked to speak and it was special because she talked about my story. Awards were given to all the donors and a photographer took photos. At my table it was me, Tyler, Lindsey, Suzanne, Maureen, and her husband Tom.

For some exciting news, Tyler started a new job in February. He works for Gold Rush Gaming as a marketing coordinator. He follows accounts that have casino games in them - restaurants, bowling alleys, sports bars, etc. - and comes up with monthly promotions for them. He bought a sporty new Jeep Cherokee, which he loves as he spends quite a lot of time in his car. He is still dating Lindsey, who has recently started her Master's at Northwestern to go along with her social work and psychology degrees.

Steve is still in sales and but also still dealing with the loss of Alyssa. Last week he was saying if there were two things he could change in his life, it would be if his wife wasn't blind and his daughter didn't pass away. He is fixing up our old van for his sister.

I, myself, have been in a grief group through The Chapel and have been finding it very helpful in discussing how we all grieve differently, and looking at healthy ways to cope along with the religious focus that is comforting to help with any loss. My session ends in three weeks, so after that, I plan to possibly find a therapist or somebody else to talk to who deals in this field.

I'm looking forward to a relaxing, uneventful spring and summer, but also to doing some more traveling. In addition to my sister in May, I want to go see my brother sometime between June and August.

Many thanks to all of my friends for all of their support and much needed friendship over this past year. Now that my doctor appointments are lessening, it will be nice to be able to do more fun things with friends. Recently I've been to dinners, lunches, book clubs, the movies, and I saw Jay Leno perform and went to the Chicago Improv for stand-up comedy. I'm looking forward to going to Ravinia for concerts this summer, and I've got tickets to see Elton John in February of next year. I'm also looking forward to getting together with my sorority sisters for our yearly day at the track, dinner out, and maybe even the polo tournament that we talk about every year.

I've also decided I really do want to write a book so now I need to figure out an outline for it. I think it will be therapeutic.

Wishing you all a happy spring!

From Angela and Ron for our memorial garden...

 ...and another for our wall (with raised lettering for me)

From Tyler's friend, this rose from Ecuador will open and close for seven years

Also thankful for a handmade bracelet from Maui with a cross and purple beads

Holiday Cheers! Only Read This When You Have Time for a Pot of Your Favorite Hot Beverage - LOL

I was so happy to welcome in January 1st of 2018. Let's just say 2017 goes down as one of the worst years. Let's start with some of my good memories since my last post.

Sheila and Barry came in town for a trip that overlapped with a longer visit from my good old friend from London, Michele. It was fun jumping back in time, giggling about the good old days and all the fun we had, and enjoying a concert and the city of Chicago for four days. It was so nice to be in the city without going to a doctor appointment, as we enjoyed shopping, eating, Starbucks, live entertainment, a boat ride, and even a piano bar. I felt so much more alive and young again, as being with these friends brought me back to my 20s. Michele was also very helpful in helping me organize my home as well as shopping for new bedding and home accents. She and I laughed at the fact that she introduced me to my husband and I introduced her to her ex-husband, who we saw at his Chicago restaurant.

The fun didn't stop there. Two weeks later I went back in the city for another weekend as my Aunt Jan and Uncle Jim were in from Texas to celebrate their 50th anniversary. It was a great evening in a VIP hotel room some 20 stories up with a terrace view of Lake Michigan. It was great to see all my family and cousins who traveled so far. After that party we continued to another hotel where we all went to another party until 3:30 a.m. I didn't realize I still had the stamina in me to party for so long!

The third week of November I went to Florida with Tyler to see my sister Robin in North Port. She lives about 10 minutes from the beach and across the street from a canal. She is the happiest I've seen her in years. She absolutely loves the weather and I could live down there myself in a heartbeat. Her home is just lovely with a 12' wrap-around porch and five acres of land. We went to the beach nearly every other day. Due to my skin cancer, I think I was the only one on the beach facing away from the ocean to avoid the direct sun. It is just so calming to hear the ocean waves and birds.

It was great to spent some quality, fun time with my nieces as well. I was fortunate enough to be in town when Taylor and Olivia performed in a dance show. Brittany also came down to visit from South Georgia. It was so good to see her, though unfortunately she and Taylor were sick that entire time, and were really not up for doing too much activity. It was also great to see my brother-in-law Jordan, as I rarely get to see him.

My favorite memories there were at an outdoor tiki bar with beach games and great tropical drinks. My new favorite drink is a key lime daiquiri. It has key lime liquor and coconut rum, and a splash of pina colada or pineapple juice. It was so good that I had four of them (over two visits).

In addition, since they live near a canal, we saw alligators, egrets, and pelicans almost every day, and yet we also heard roosters from her neighbor's farm. I think one day we counted 12 alligators -- and we're talking 12-14 feet long.

Tyler and I had a wonderful Thanksgiving at Robin's with a traditional meal. (Steve went to Michigan to be with his mom and brother.) A couple days later, we had another homemade Thanksgiving dinner at my cousin Debbie's beautiful ranch home in Ft. Meyers. Without sight, it felt to me very open and calming, and I could smell the flowers. She has an indoor pool with a Jacuzzi to boot, and a bar that converts to a poker/blackjack dealer station. Of course we could not leave without playing.

During our stay, the students were asked at the high school if they ever had an exchange student. Taylor raised her hand and the next thing we knew, Robin received an exchange student the day before Thanksgiving. Selena is from Denmark and is staying until the end of the school year in June.

The family is enjoying her and learning all about her culture. Selena is a junior in high school, which is perfect for Olivia (a junior) and Taylor (a senior). Due to the lack of a drinking age in Europe, she's been drinking since 12. She no longer likes tequila or vodka, and has been clubbing for the last two years. I feel like we are much more conservative here, but I'm happy my kids have lived a more conservative life. She also speaks six languages fluently, and has a bigger English vocabulary than Tyler!

Toward the end of our visit, I took a trip with Robin to Downtown Disney while Tyler and his friend Philip went to SeaWorld for the day.

I feel like Florida was the start of my birthday month because from Nov. 20 until Dec. 20, everything was about me. I've gotten together with several sorority sisters for birthdays and holidays. In the neighborhood, we've had several book club meetings and an end-of-year party, and as we celebrate our birthdays with each other, mine was at Wildfire. As a matter of fact, I had six meals out for my birthday in that week. I also went to three holiday parties and two Christmas gift exchanges in December.

Also over the holidays, Sheila and Barry flew in again as did Diana (Dee), and we all got together with Sheila M. and Dee's special surprise guest, who turned out to be another high school friend, Dorsey! We graduated together, her family lived down the street from me, and we used to go ice skating and sledding together.

Unfortunately I lost a dear college friend, Jeff, who passed away in December from a fast-growing brain tumor. His youngest kid is 20. It's so sad that he was such an alive, fun, active guy who died too young.

Hearing about the school year was rough. Everyone talked about Homecoming and drivers ed, and it hurts to think my daughter will never be able to experience these but I still want to hear about it. I'm happy for my friends and their kids but sad for me.

Oak Grove School had a lot of donations come in on behalf of Alyssa. They planted an abundance of trees/flowers in the junior high area and put in a purple bench swing, which seats about four little kids, and surrounded it with lilacs. They retired her locker and put her name on it. They put in a TV screen displaying student art and other works as Alyssa was very artistically talented. There is $2-3,000 in arts scholarship money that will be awarded in what would have been Alyssa's senior year (2021). In addition, there was a scrapbook composed of pages made by her teachers and classmates; they framed her last piece of art; they had Alyssa tee-shirts made up that are still being worn on the 27th of every month and on her birthday; and at graduation they had a rose on her chair and left an open spot for her on the stage, and they sang the Hallelujah song with the band. There are also two Instagram sites that the children have come up with to share their memories and photos and videos.

In addition to all the school has done, there was also a large group that donated to the VHL Family Alliance (www.vhl.org) in her memory. As a matter of fact, if you still want to donate in honor of Alyssa, they will post it in their newsletter.

At the end of September, I joined a grief support group that was run by The Chapel, a non-denominational church. I found this very helpful as it makes you feel like you're not alone. The ages I've seen there are between 18 and 72, which just goes to show you that grief can hit us all. Unfortunately, I only attended four or five of the meetings before the session ended. I will rejoin starting Jan. 21st.

Though it has been a difficult time grieving the loss of Alyssa, we are convinced there is something (Heaven) when you pass. We have had multiple signs that are reassuring and so comforting. Alyssa's spirit must be a strong one and when you combine that with my blindness, I think I am much more in tuned to my other senses. I have had multiple hellos from her (like a tap on the shoulder). I even had a little plaque fall off the refrigerator onto the floor, which none of us had ever seen before, that says:

My Mom

When I compare my mom

To other mothers that I see,

What a lucky kid I am

That she belongs to me!

I just feel this connection like she was there. Additionally, an unbelievable amount of cardinal birds are being seen by our family as well as everyone Alyssa knew. This really fueled Steve's bird watching interest. Also, one day when Steve was driving, he looked up and saw a cloud that looked like a winged angel and he started taking photos, and as he got underneath it, it looked like Alyssa's face and button nose. She had the cutest nose. I still have dreams of her almost nightly (last night we were swimming at an indoor pool with a slide and a bunny). My house feels like a shrine with angels, artwork, photos, and other things that remind us of her, yet I can't see any of them, and maybe that is why I keep seeing her in my dreams.

Back in April, the person who got Alyssa's lungs sent me a beautiful letter, including how her donation was a gift that was near and dear to their heart. I corresponded back six months later, on Alyssa's birthday, and I'm now waiting to hear if she is interested in meeting. I also wrote a letter to the family of the child who received her liver, who is doing great, and have not yet heard back from them. Alyssa would have been so happy to know that she was able to help others.

Alyssa's birthday, October 24th, was a tough day although it ended up being a better day than I'd thought as we were surrounded by many of our friends. We decided to have Alyssa's friends write out notes to her, which we printed out along with our notes to her, and then we released them with helium Mylar balloons as we sang Happy Birthday. We followed this by going to her favorite baked potato bar. Six families and friends of hers joined in the festivities. Everyone talked about memories of her and we were all able to laugh. Believe it or not, all 18 of us ordered a baked potato! Again, it was a very hard week as we all miss her very much.

As much as I was craving Christmas cookies in December, I made a lot of chocolate pretzel rings for friends. I used to make Christmas cookies with Alyssa and now that she is not here, I had to make something easier. I think it made me miss the cookies that much more.

The Christmas season overall was very blue as I only had to shop for Tyler for the most part, besides some other gifts, and it was unusual not to buy for Alyssa. On Christmas day, it was very awkward because all the presents under the tree were for Tyler except the one he purchased for me, so it felt very different as we normally took turns opening gifts.

When I first talked with Steve about what we should do for Christmas, he said he wasn't going to celebrate it this year. I told him we have another child that we need to celebrate and make new traditions with, but unfortunately he couldn't do it and pretty much stayed in Alyssa's room for the two days. However, he has been more flexible recently as end-of-year sales are slower, so he was able to travel to see his family and spend more time relaxing at home.

We were invited to spend Christmas Eve and Day with my family, yet even Tyler said it would be too hard to go so we ended up staying home. Instead, I think we watched like 20 holiday movies this season. We did go to church as a family, and we even exchanged gifts the day after Christmas. I got some beautiful sweaters and an adorable dress from Tyler, and Steve got me an iPhone 8 Plus and it came with an iPad Pro that is super fast.

The weather kind of goes with our mood. It has been extremely cold, dark, windy and depressing out, although we did have a white Christmas. The single-digit temperatures are no longer anything I want to deal with. I need to fly south like the birds.

Speaking of birds, we have about 100 in our backyard! It is like a bird sanctuary as Steve feeds them daily and has installed a heated birdbath. I don't know how the birds don't freeze up after a bath. We threw a bucket of water in the air and it turned to ice.

Regarding my health, I'm still experiencing eye pain and redness in addition to blood coming through on the iris. The doctor wants to try in a month to do an injection to absorb the blood. If that doesn't work, the only other option is to go in surgically to clean and irrigate the eye.

I had my kidney and lung scans that came out clear with no metastasis seen yet. I recently had an MRI with the brain and spine and will get the results on the 17th. The only difference I feel is I'm getting more headaches but it may be from stress, through I'm also feeling some imbalance when I'm not walking.

In September, I had Mohs surgery on my left upper lip, which was supposed to be the size of a dime and turned out silver-dollar sized. Luckily, the plastic surgeon afterward closed it in a way that it hid most of the scar in my smile line, though it was a very painful procedure. In addition, I had more freezing of precancerous skin areas.

I also went to a bladder specialist and I'm now on a regimen of antibiotics, probiotics and cranberry pills, yet I still managed to get two bladder infections and my creatinine level has now jumped from 1.6 to 1.8. When I received my kidney, it was 1.0, which indicates perfect function. Over 2 is the beginning of kidney failure. They don't know why my function is not a good and they say we just have to keep watching it. I myself attribute it to the bladder infections because there's nothing else I'm doing differently.

More fun times are ahead. I definitely plan on going down to Florida for another visit soon. Since Selena is in the spare room, I will probably wait until Jordan goes out of town for a couple weeks. In the meantime I may look into flights to Colorado to visit Jeff.

My 43-year-old cousin Wendy (Mary's daughter), is having a baby girl next month. I look forward to going to visit the baby and bringing a personal gift when she arrives.

I also got an invitation for a kidney donor/recipient reception at the University of Chicago. It's a celebration with food and speakers, and my donor is going to speak at it. Tyler, Lindsey, Suzanne and I are all going.

Suzanne continues to be my chief, getting me to most of my appointments with help from a few other friends, who give her a little bit of a break. I am thankful to all who have helped me and listened to my complaining and/or just lent an ear.

Again, we now realize just how much Alyssa was loved and will be missed. The overwhelming support from everybody has gone above and beyond what we would have expected, and we are just so appreciative.

Lastly, we were so excited about Tyler getting a job at an advertising firm, and though he learned a lot, it was only part time so he is now seeking full-time employment in the marketing/advertising industry. Please spread the word. I'd be happy to send you a resume. He is doing some marketing and social media work for another local business in the meantime.

Yipee! I'm so happy to ring in the new year in. 2018 has got to be better! I'm wishing you all a happy and healthy one as well.