Wishing Summer Would Never End

Wow, I can't believe our dog days of summer will soon be coming to an end. I hear many of my friends talking about getting their kids ready to go off to college or high school again, and it all begins on Monday. It is crazy how fast time flies.

Summer began with Tyler's graduation from University of Wisconsin Whitewater. I'm happy to say he graduated with over a 3.0 GPA in marketing and finished in four years. To me, that is an accomplishment in itself. Well, he may actually have a position at an advertising firm. He's waiting to get the contract to look over the details.

We did a joint college graduation party in June with Tyler and his girlfriend Lindsey at her family's country club - how lucky. It was one beautiful affair. The food was excellent and we even had a sweet table and popcorn for people to bag up and take home. Fun was had by all.

Steve is still working at the same company for five years now. He had a memory garden for Alyssa made in our yard with purple flowers, some chairs, a couch, and a swing around our fire pit, and he spends a lot of time there. It is meant for friends and family to come and reflect and remember Alyssa. There are memory stones and autograph stones that 50+ kids have already signed.

As for myself, I'm doing my usual daily things like reading, listening to books, calling friends, and planning outings. I've been able to get out for quite a few meals, and the highlight so far has been going to see Paul McCartney in Tinley Park. My son and I went with my large family - there were 16 of us total in the lawn. It was so much fun to get up and dance, and being blind I probably had more fun than anyone else, as I was in my own world dancing and singing and I didn't feel like anyone was watching me. Now I am in search of seeing more concerts. I realize how much music means to me, and I used to go quite frequently when I was younger. I'll try to hit Ravinia up a couple times before the season ends.

I may not have traveled yet this summer, but Sheila and Barry took a trip to Australia. I live vicariously through their lives as they travel quite frequently. Sheila even brought me back a pair of pajamas and slippers that first class passengers receive, so now when I sleep in them, I dream I am taking a trip. Their Florida trips this summer were too short for me to join, but they are coming here to visit in early September.

In addition, Michelle, my long lost friend from London, will be coming in to visit from August 26 to Sept. 9. We have so much to catch up on as we have not seen each other since Tyler was 12 and Alyssa was 5. That was almost 10 years ago. She's going to flip out when she sees me now; it's mostly my skin that has changed. We will be venturing downtown for four nights while she is here to see the city, and are planning to visit her ex-husband who is the owner of Bareburger in Chicago.

Also this month, my Godmother and Aunt Jan will be coming with her husband, Jim, and family to celebrate their 50th wedding anniversary. I was actually a flower girl in their wedding. Her children are throwing a party which includes everyone who was in their wedding party, as well as family and friends of theirs from high school. Jan and Jim met in high school (cheerleader and athlete). They are making a weekend of it, beginning with a Cubs game, party on the lakefront at a hotel, and then a large family outing.

I've also had visits with my sorority sisters. They've kidnapped me for lunches and dinners, and we have future Ravinia and Arlington Park Race Track outings later this summer. Wow, my summer is certainly ending with a bang - a busy August and September ahead.

Here is the latest on my health:

Eye: Upon returning to my eye doctor in late April, I was hoping I would be putting a date on his calendar for a heroic eye surgery to both clean the blood out of my eye and rid me of any tumor that he could see while I was under anesthesia. The day I went, I had pneumonia, was feeling like crap, and waited three hours to see him. By the time I got in, he told me he thought I missed my window of opportunity because I wasn't seeing the light perception as much as I had at our last appointment. He said he would not just go in and do surgery because he may not even get perception out of it once it was through. I started getting teary eyed, so he grabbed my hand and said, "You overcome everything, you'll get through this, too." And then he told me he'll still see me in case it changes and to let him know. Tyler and I went to see him about a week ago, and I could perceive light going on but not when it turned off. If that improves further, he may consider doing the surgery. At least things moved in the right direction. In the meantime, my right eye has been painful and red, which he said is a side effect of the radiation I did 18 months ago and I may have that forever. It sucks. I didn't know these would be the side effects.

Kidney: My function has gone down slightly. My creatinine has gone from perfect to 1.6 (over 2 is the beginning of failure) but I think they feel it is due to my frequent bladder infections and use of many antibiotics. I have my 12th or 13th infection since my transplant right now (about one a month). My doctor said this bacteria is now resistant to every antibiotic but one, and the one that will work is harmful to my kidney. If the infection passed into my kidney already, the antibiotic will not take care of it. I'm supposed to see how I feel this week. If I get fever, back pain, or worsening symptoms, I'll need to be admitted to the ER for IV antibiotics. I've been frustrated with these infections since the beginning and have told the doctors I feel there are too many and there must be something not right. Just as I suspected, my tolerance has built up and I may have to be hospitalized to treat bladder infections in the future.

Skin: I'm still being treated for skin cancers and need to schedule myself to have Mohs surgery on my lip. I opted to wait until later in Sept. because I was very worried about the summer sun and being in the public eye with friends. I pretty much wear a light sweater most days to prevent the sun from hitting my arms and I sit in the shade most of the time. That's so unlike me.

Pain: I inquired about medical marijuana to treat chronic pain that I continue to have, mostly in my neck and back. My doctor thinks my pain medication is a better option, and I should cut back on that, but she does not recommend I use a natural alternative like medical marijuana. It doesn't make sense. I'm hoping to pursue this issue with a pain group. When I asked her for a sleeping pill, she said I need to find a therapist as well to get at the root of the problem of why I'm not sleeping (including stressors like Alyssa, my health, etc.). It's only been five months since Alyssa's passing and I know I have a long journey ahead. Not a day goes by where I don't have her on my mind.

By the way, for all of you wondering what really caused Alyssa's passing, the autopsy of her brain and upper spine diagnosed a VHL tumor in her brain stem and top of her spine that ruptured and caused this area to bleed. She may also have had my clotting disorder, which could have caused her to bleed more?? It took a while to get the results. We all still need to pursue therapy to get over this tragic loss. Steve is going to a therapist for it already; I'm looking forward to my support group starting in September; and Tyler has been seeing someone from the Chapel and we are searching for a good therapist for the two of us.

Tests: In October I will be getting all of my scans again - brain, spine, and though I no longer need my kidney or pelvis scanned, they now need to scan my lungs. At my post-op visit after my kidney removal, the surgeon said that the pathology report showed cancer cells in the fat that surrounded my left kidney. Even though he extracted the fat layer, he also accidentally punctured my lung and dissected a piece off of my diaphragm. He is now concerned that I may get metastasis to these areas. I know it only takes one cell. I chuckled when the kidney surgeon asked why I waited so long to have that one removed, because he had told me three or four times I needed to wait and it could be years before I could have it out, and the tumors were small. So, when I needed the pelvic mass removed, I felt it best to have both surgeries at once. On the bright side, I no longer need any pap smears due to the hysterectomy. Woo hoo!

As many of you have already heard, my sister Robin and family have moved from the Poconos to North Port, Florida (between Sarasota and Ft. Meyers). She moved into a rather large home with lots of property and even two palm trees, and she's a 10-minute drive from the ocean. As soon as she builds her pool, I will be there. My room is already ready and furnished, and has a bathroom. I think I know where I will be spending many of my winter months!

My brother Jeff had brain surgery in late May and is doing quite well. He is still having some neurological problems as the area was so swollen before surgery and contained a large cyst, so following surgery he still had some headaches. In addition, he is now a diabetic, as his pancreas could not handle all the steroids needed to keep the swelling down, causing his function to stop, so he now takes insulin three times a day. But he is still just overjoyed with life as he never thought he would survive the surgery. Their kids are all growing up so fast and unfortunately we usually only see each other due to a tragedy or surgery, so Sheila, Barry, and I plan to visit Colorado sometime soon just for fun.

It looks like I have a busy five weeks ahead of me but they all sound quite fun-filled. I look forward to seeing all my family again, and my great friends coming in to visit, and the sorority girl outings. I'm so blessed to have all of you in my life. Again, many thanks to those of you who have helped me throughout the summer (phone calls, rides, shoulders to lean on, people to dine with, etc.). Hoping to see more of you as the summer continues.

Happy to be home!!

Kim was discharged yesterday. We got back home at dinner time. Felt so good to be free!!! Stacey came in the morning and stayed all day with us. She brought some delicious muffins and treated Kim to a Starbucks. YUM!!  The doctors cut Kims pain meds in 1/2 which made for a painful day and a more painful night. While I ran out to pick up Kims prescription, she was very surprised when she heard Tyler's voice in her living room. Tyler and Lindsay showed up at the house wanting to surprise her. Jo came later with some Lou Malnatis pizza for them.  Kims so happy to have him home for a couple days. Today her pain was worse in the morning after a restless night. Believe it or not she was up before 8. As the day has gone on the pain is a little more tolerable. She was able to shower, which was a good thing after being in the hospital all week.  Thanks again for all the prayers!!! I'm planning on staying through Tuesday or Wednesday. Lastly, we were talking to our brother Jeff who made it known that this is the first time in 25 years that Kim is cancer free as far as the kidney is concerned!!!  When I told her that yesterday while still at the hospital, we were taking a stroll in the hallway and she had to stop to do a "jig" (dance). She was so excited!!!! Til next time...

Improving everyday!!!

We slept for about 5 hours last night...felt so good. Doctors started their rounds at about 5:45 and were done around 6:30 this morning. Gyne/oncology group was impressed with progress Kim was making. Urology group told Kim that her hemoglobin went up to 10.1 and her creatinine down to 0.8. This is the lowest reading Kim can recall ever having. White blood cell count is slightly elevated at 13. Urology team removed catheter from bladder and she has been to the bathroom 5 times peeing like a race horse!! They also removed the juggler iv from her neck which was great since it was so irritating for her to have. She couldn't put the phone to her ear, which for Kim was a priority. Lol This afternoon her "special k" was discontinued. That was the pain medicine that they started yesterday in the iv. Her PCA pump was also discontinued. She is now only taking oral med for pain and doing great!!! Her friend Angela spent the afternoon here. She brought gourmet cupcakes and some Reese's eggs....oh these sweets are yummy!!! Activity wise, she has spent a lot of time in the chair. We walked the halls a few times together and OT took her once when they came. Planning to go home tomorrow unless something comes up between now and then. It's looking good as of now. Jo is planning on coming here this evening. If she doesn't, we plan on having a relaxing night watching a movie.

Update #2

Kim had a rough night and morning. Lots of pain and trying to get it under control was very challenging.  Finally mid morning she was feeling relief. Her hemoglobin was at 7.1 so she needed a blood transfusion (2 units). Our cousin Curt came this morning with Starbucks for Kim (her fav) and stayed all day. It was nice to visit with him. Then Mindy came bearing new jammies and chocolate covered blueberries (her other fav). She got up and sat in a recliner for a couple hours today. She had her pain meds changed and now is feeling a little more comfortable. She also looks 6 months prego due to the co2 used during surgery. She's thrilled about that. Plus, the nurse just referred me to being her daughter. Lol. (I like that. See I am 26) So that's one of the things that keeps her from being comfy. In the last 2 nights we have both had a whopping 6 hours of sleep. So on that note, this is a short update as we are both going to try to sleep before she gets bothered in the middle of the night by blood draws and doctors starting their rounds at 5:45. Nighty night!!! 😴😴😴

Update on Kims surgery

Hi everyone. Well our day started at 4:00 this morning. (Good thing Kim has been able to sleep all day). Her surgery is over and everything went well!!!!! Thank God!! Her kidney surgeon said that the kidney was attached to the diaphragm so he had to remove a little piece which he stitched up. They will be monitoring her closely to make sure no air gets in between her lungs and wall of her chest cavity. Not a major complication though. Then the gyne/oncologist surgeon said that surgery went well also. She removed both ovaries, both Fallopian tubes and of course the mass. That mass was a cyst that was attached to an ovary. She said its highly unlikely to be cancerous....another thank God!!!  It has to go to pathology to confirm, but she really doesn't think it will be positive. So, thank you for all the prayers!!!!! Keep them coming as Kim seems to have a hard time through recovery after surgery. I will do another update later tonight or tomorrow.  One more note....a big thank you to Jo, Lindseys mom, for coming with this morning. She has been great company for me!!! 😄

My Sweet Daughter, Alyssa Rose

The most horrific, worst day of my life, was Saturday, Feb. 25, when we lost our daughter. Alyssa and I had planned to spend the day with our out-of-town friends Sheila and Barry, as Steve was at a conference and Tyler was away at school. The day started with great big hugs and a breakfast at Egg Harbor Cafe with Alyssa's favorite carbohydrates (pancakes, bagel and breakfast potatoes) and a hot chocolate with extra whip. Not only was she so happy and excited to be out at her favorite restaurant, but I was so happy to be able to take her there. This would not have happened without our friends in town. They always treated Alyssa like one of their own. Afterwards we all went to our home and sat around telling funny stories, listening to music, hearing from Alyssa all about what was coming up in her 8th grade year -- Peter Pan play, talent show, two-day trip to Chicago and Great America, 8th grade dance, graduation. She also told us her schedule for freshman year in high school, which included driver's ed in her 2nd semester.

I remember Barry telling Alyssa "I don't know what I would do if anything ever happened to you; you're like the daughter we never had. I don't think you know just how beautiful you are inside and out, and what a great person you are." Then I jumped in and basically repeated most of what he said, yet added that it's so hard to believe with her great personality and smile and beauty that she was not more confident about her friendships. Little did she know, she had friends in every group. I told her to wait until high school, since that is when I met Sheila, and look how close we've been all of these years. She always wanted to be like me and have great long-time friends.

To me, this day was a gift, because many times on the weekend she was off shopping with her friends, at parties, or just hanging out and not doing mom things. As much as she said she wanted to go out that night, I know she really enjoyed the day as well.

That evening, she got a phone call to go shopping and got ready, but then began screaming and crying that she had the worst headache. I've never heard her sound like this in my entire life. Steve ran up to be with her, and then Barry, and Sheila and I followed and called 911. We knew something was drastically wrong, as did she. I heard she had major fear in her eyes as she was so unsure what was happening. She could not feel her arms and legs, and her vision kept coming and going. She kept crying that she didn't want to leave the house, but we reassured her that we loved her and we'd be with her at Condell and we had to find out what was happening. We continued to talk with her and reassure her until she went for a CT scan. Afterward, she was to be transferred urgently to Lutheran General Hospital as they are a Trauma 1 and better equipped for this neurological disaster. Soon before we left Condell, Tyler and Lindsay arrived from school.

We left to drive to Lutheran General and she was to be airlifted. She did not arrive until more than two hours later. I have never felt time pass so slowly. No one could tell us where she was or why the delay. We finally got word that she was minutes away. They rushed her in to put a shunt to drain the blood out of her head but unfortunately it would not drain properly. She then went for another CT. The doctor showed us the new scans compared to the first ones from Condell and there was a dramatic change. In one scan she had flow to the brain in blood but the second scan showed major bleeding with a clot at the base of the brain that blocked the blood supply for oxygen to reach the brain. The doctor told us it was called a "sick brain" because she was most likely completely brain dead at this point. After a series of brain activity tests, she was pronounced dead at 9:00 a.m. on Feb. 27, but they kept her on life support as we chose to consider organ donation.

As of now, we still await autopsy results to learn what caused this to even happen to our healthy 14-year-old. The neurosurgeon seems to think she may have had an arteriovenous malformation (AVM) or an aneurysm most of her life that just suddenly burst. She was also very recently diagnosed with having the VHL gene but luckily we had not yet told her. I don't know what is taking so long to complete the autopsy.

The nurses, physicians, social workers, and chaplains were all incredibly supportive at Lutheran General. I sill have a lot of unanswered questions about what happened at Condell for the hours she was there.

All of our family and friends were also wonderful. Robin, Jeff and their families; Sheila and Barry (and family who flew in later); Lindsay and Jo; Steve's brother Mark and family, Suzanne and Mindy, and others - we all sat at her bedside for days while they planned her organ donations. Due to the fact that Alyssa was otherwise healthy, we decided it was best to give forward the gift of life and sight. After being an organ recipient myself, I can only tell you what an incredible gift it is. The process took until 5pm Wednesday to find and schedule recipients and then harvest her organs in surgery.

So now her corneas are in the eye bank; her liver went to a local 4-year-old child; a local 30-year-old received her intestine; a 60-year-old from NY received her lungs; and her heart went to a woman in her early 50's who, by the way, was a perfect match to Alyssa and lives in Pittsburgh. All the transplanting was done by Wednesday evening and everyone is most likely home and recovering. If they're so willing, we would be honored to meet the people who received her organs and see that Alyssa is still here with us in part.

As most of you are probably already aware, we had a wake and service on March 4th and an open house the following day so kids could come with their families, be in Alyssa's room, see all her things, and say their last good-byes. From most of the people I spoke with, they said this was probably the largest wake they had ever seen. The mass at the end of the wake was standing room only and there were speakers so those in outer rooms could hear what was said. The pastor and youth minister were wonderful in explaining to the kids and families why bad things happen and where you go when you die. Alyssa's cousin and close friend Emma from Colorado and two of Alyssa's dearest friends all spoke, followed by my sister reading Tyler's eulogy, and then Alyssa's Godmother Debbie reading mine. It was a very emotional day - there are no words to describe it. I'm still in shock as the day was so wonderful and the rest seemed like a bad nightmare and felt so surreal. My hardest part is I will never get to see her again or any pictures and videos. All I have are my dreams and memories.

I'm hoping this will be the worst blog I ever write in my life and I look forward to updating you shortly, telling you how easy my surgery was, that my tumor is benign, and I'm looking forward to eye surgery to hopefully see a little something again. In the meantime, we are enjoying the many little signs that remind us that Alyssa is still with us.

I would like to thank everyone who was here to surround us during this difficult time. In addition, I would like to especially thank Oak Grove School teachers, students, and their friends and families. The outpouring has been so overwhelming and so appreciated. Not a day goes by where I don't receive about 100 texts and 20 phone calls trying to make sure we are all okay, and what, if anything, we need. Finally I'd like to thank The Chapel's pastor and youth minister for making this an easier time for all of us and Alyssa's friends. One of the most remarkable things I've heard is that all the children are now talking about becoming organ donors, and many have joined the morning youth group, and many believe that Alyssa is in a much better place and is probably enjoying a baked potato bar as we speak (ha ha).

Finally, not a minute, hour, or day goes by without Steve, Tyler, and myself feeling surrounded by Alyssa's presence. We've all had difficulty sleeping, and keep awakening with nightmares of that dreadful week. I don't know when, if ever, you can get over losing a daughter or sibling. Please keep Alyssa alive in your memories so that she will live on forever.

Happy 1-Year Birthday, Gladys (my new kidney)

As so much has changed medically since my last post, and not for the good, I've decided to list them in bullets.

Eye: Due to radiation and aggravation of tumors and eye bleeding throughout, I'll have surgery at the end of April or beginning of May to hopefully return some shadows. I've not seen anything since the bleeding started. I've rarely seen a shadow since late October.

Back: As cane training had not resumed since winter, I decided to take myself through the neighborhood for walks. In November after walking into multiple vans and landscape trucks almost daily, I twisted my lower back. Went to the ER twice, first to rule out a kidney issue as it was on the same side as the transplant, then a second to rule out lumbar spine disc issues or problems. Physical therapy did not work. I went to a pain clinic in mid-January and had an epidural Lidocaine injection that worked like a charm for nine weeks, but the pain is now returning. Don't know if I can get another one so soon.

Bladder: I've had occasional bladder infections, which if not caught early, land me in the hospital with a high fever and need for IV antibiotics.

Gladys: My transplanted kidney is still functioning wonderfully. Since it has now been a year (Feb. 5), it's time to get my other (left) kidney out. Surgery date is March 27 and it will be removed as planned, laparoscopically. But wait, there's more...

Pelvis: I received a phone call mid January regarding the lumbar spine scan taken in November. Upon the VHL team reviewing all my scans, they incidentally noted an orange-size pelvic mass. Believe it or not, the ER had nothing of that in their report because they were only looking for a cause of the back pain. I guess it was a blessing they found it now as there is a chance it may be a cancerous lesion that might not have been noticed until next year's scan. I'd not felt anything there, having had a hysterectomy 2.5 years ago. So on March 27, immediately after the left kidney removal, a gyne-oncologist will remove the pelvic mass and my tubes and ovaries, also laparoscopically. The total surgery is blocked for 8.5 hours; I'm so lucky I'll be sleeping through their shift of work. Cross your fingers and say your prayers that the mass is benign. They say I have a 30% chance of it being malignant due to the fact that my kidney anti-rejection drugs, on top of having VHL, increase my risk. Which brings me to my next body part...

Skin: Since Jan. 13, I've had a total of 18 skin biopsies. I've had one three-inch incisional removal, eight Mohs removals, five ED&Cs, and maybe 40 pre-cancerous areas frozen. The doctors are very concerned as they've never seen skin cancer grow this quickly, but they believe it is a side effect from my first set of kidney anti-rejection drugs. From one appointment to the next, within several weeks, my skin changes. They continue to take photos and document the growth, and I'm scheduled to have a full body exam to catch not only the obvious, but areas I may be missing. After discussing this with my transplant team, they think the drug combination I'm on now is the best in terms of blocking out cancer, but I've only been on it for four months and hopefully this damage is coming from before then.

If that is not enough, my father-in-law passed away at the end of January. My son tore his ACL and meniscus and had surgery the first week of February. The day after Tyler's surgery I became septic and landed in the hospital for four days with a fever of 103. And then, losing my sweet angel Alyssa. I'm dedicating a separate post to her.

Life obviously hasn't been all negative because I have the greatest group of friends. I've been able to enjoy many different parties, the holidays, and my monthly book club keeps me busy. Having had a bad year on dialysis, the end of 2016 was just wonderful because I was really feeling better, and better able to enjoy more of seeing my family and extended relatives. This Christmas was a special one. I don't think there was a single thing my kids had a need or want for. I don't think I'd ever seen Alyssa so happy as she got an iPhone 7 and iPad mini and lots of clothes from her new favorite store Pink. I'm looking forward to Tyler graduating this May. The time went by so quickly. He should be graduating in the spring in marketing.

I was also able to get away and travel for a week in January. Sheila and Barry kidnapped me for another getaway, this time to South Beach. Wow, there sure is a lot of money there, as well as in Miami. We took a narrated boat tour to see how the rich and famous live, and every hotel we went inside was just incredible. Our hotel was in a great location along a canal with a balcony leading down to an almost private Jacuzzi. The beaches and boardwalks were lovely and we enjoyed just walking around the town. Pretty much we ate and drank the week away. It wasn't the best weather but I was with the best of friends. After what I've been living through lately, I think it's time to plan another trip.