On May 22nd, there was a lip sync contest at the Top Hat to help raise money for Camp Mak-A-Dream. It was a great event. There were two very special parts of the eventing. The first was when 15 of Addie’s friends with the help of their 6th grade teachers performed a song in honor and tribute to Addie. You can see the performance on you tube by searching “Addie’s Army Lip Sync”. There is a video of the performance as well as a video of the slide show that was shown during their performance. We are very grateful for the hard work that went into this wonderful tribute; Addie’s friends, the teachers, and the slide show creator and videographer did a wonderful job. The second special part of the evening was when Addie’s 5th grade teachers performed as “Addie’s Army” and did a fabulous job, and ended up winning the lip sync battle.
Time continues to go by, some days much easier than others. All of the events, people and situations have helped us celebrate and appreciate the time we had with Addie. We are trying to settle in to normalcy and routine, but it is hard. Michal
Addie’s 12th Birthday. We woke up to waffles, strawberries and whip cream, and bacon. We are taking each moment as it comes, and just planning on enjoying the day together.
Tonight we are still planning on heading over to Target Range school for ice cream, wish lanterns, and luminaries. The weather may not be on our side – but perhaps the wind and rains will calm just for a few hours.
Happy Birthday sweet Addie – so grateful for all that you have given and taught us! We sure love and miss you. Michal
On May 15th, 2016 we will have an ice cream social and lighting of love (Chinese lanterns and luminaries) at 7:30 pm at the field behind Target Range School. May 15th is Addie’s birthday – and as our family thought about what we wanted to do our thoughts turned to ice cream and light – lifting ourselves up. We will have some Chinese lanterns to light off as a group, and we thought it would be fun if people wanted to bring their own luminary designed and decorated either to create a path or image on the field behind Target Range. ( We will have tea light candles for your luminary).
The past month has been a month of being okay. Adjustment and newness in a way we did not desire, but knowing that the only option is moving on and enjoying life and each other.
Addie’s celebration of her, and her life here took place on March 23rd, 2016 at the University Congregational Church, Missoula MT. As I try to put into words the way the celebration fell into place – the support, the love, the events that occurred prior and after, the children…..
I wanted to provide the link to the recording of Addie’s celebration. Thank you for traveling this path with us. Michal
I apologize for the delay in posts. The last two weeks have seemed to go by too quickly. Addie was able to get settled in at Community Medical Center. We are so blessed by the wonderful nurses and doctors that surround us there. At the end of last week, we were planning to transfer Addie home. Thursday was a difficult day for Addie, and we were not sure if getting her home was going to be possible. However, Addie did state today that home is where she wants to be – so we are hoping to achieve that goal sometime this week.
Addie was strong this weekend, but definitely is in a fragile state. I really appreciate how respectful everyone has been of our time and space. Addie has been able to visit with family and some friends – but Ill be honest – I am being picky mainly out of respect for Addie, her siblings, myself and Ryan. So many love us and have cared for us – but I do feel this is an important time for me to be selfish with our time.
My prayers and hope have turned to Peace, Peace for Addie as she makes the transition from this world up to heaven – and peace and hope for all of us left behind as we learn to tread this world without her. Love to all, Michal
She is here!!, and she is doing well. She arrived Tuesday afternoon – and spent that afternoon with her siblings. Wednesday she was able to visit with her grandparents in the morning, and then have a delicious lunch (grilled cheese from Cafe Dolce) with an aunt. The afternoon was spent with two good friends, and then dinner with another aunt, her cousins and sister Anna. It was a busy day – and Addie felt good and loved it.
This morning she is still asleep as I sit quietly in her room. We have started a schedule, and if you know Addie – you know she loves schedules. Currently Addie seems focused on seeing those who surrounded her most recently in her life – and really her siblings/cousins are her main requests at this time.
The outpouring of love continues as many have reached out to let us know they are there for us. Thank you. As Addie and I explore our time, if special requests are made – I will let you know.
Later this week we will be able to welcome Addie home to Missoula. We are very anxious to have her close with all of us. Addie is in a very fragile situation. At this time, only family will be permitted to visit Addie. I know she has profoundly touched numerous hearts – and I know many want very dearly to be able to see her. Once Addie is settled, I will explore with her what she wants her time to look like; I will notify those who will be able to come visit her.
I cannot express how amazing the support has been from our friends, families, the Missoula community, and even people we have never met. We could not have done this with out all of you – not emotionally, not financially, and not logistically. We are so grateful, and feel connected to so many wonderful people. We have been blessed during this difficult time – and I do feel that prayers have been answered and angels have surrounded us.
Because of all of you, we have not had to worry about travel expenses, missing work, or taking extra measures to care for Addie. It has been a huge relief to not have to stress about having the funds to do things right. However, at this time, Ryan and I feel comfortable with what we still have in Addie’s medical fund, and feel like fundraising efforts can stop.
I know what lies ahead will need strength, love and understanding – I so appreciate having all of you on this journey with us. I could only hope that each family that struggles with a rare disease has the support and love that we have been able to experience.
Today is Rare Disease Day. Today is a day to recognize individuals and their families who have to tread the waters of having a rare disease. It a strong current of unknowns: unknown diagnosis, unknown treatments, and unknown prognosis’. It’s a current where one day you feel helpless, and the next hopeful. You keep your head above water – and you keep treading, because there is always a chance you’ll beat the current and get to land.
Sometimes there are very few words to really express how one feels. Yesterday we had a conference call with the doctors at CHOP. Addie had a biopsy taken last week. The biopsy results indicated that Addie has Angiosarcoma – which is a cancer of the inner lining of blood vessels. The most widely known cause of Angiosarcoma is lymphedema, the swelling of an area of the body due to the collection of fluid. It can also occur due to radiation exposure or treatment, but normally does not show up until years after the radiation treatment. Addie’s case of angiosarcoma has been aggressive and was visible in her left back/shoulder area as well as in her left leg. The biopsy also showed that Addie’s bone marrow is also diseased – they could do further testing to try to find out what is going on with the bone marrow, but feel like it is unnecessary at this time to put Addie through anymore procedures. They feel that Addie’s current medical situation is incurable, and our time with Addie is limited. They recommend, and we fully agree that we need to bring her home.
I spoke with Addie and Ryan after Ryan was able to discuss with Addie her situation. He said she cried hard for about a minute – and then they were able to talk about what the next couple of weeks, and maybe months may look like.
They have put Addie on new chemotherapy medications. They will not stop the cancer, but they may help prolong Addie’s life without making things unbearable. The cancer is separate from Gorham’s disease but very likely occurred because of the stress Addie’s body was undergoing with Gorham’s disease. I will keep you posted on when Addie will be coming to Missoula, and how she is doing. Love to all – I tremble with being the bearer of this news but feel so humbled, grateful and in awe that I was allowed this opportunity to be part of Addie’s life, Michal