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
Today Addie has a great day planned. Phoebe, a cousin and friend came to visit. Addie’s Aunt who is currently there with her went to go find a slushy maker and a new release movie that Addie has been wanting to watch – and Addie is hoping to get up and get moving, perhaps a walk.
Last week was tough. Addie had to have two biopsies taken as well as have a right chest tube put in – fortunately the right chest tube is no longer draining any fluid, and should be removed today or early tomorrow. When they took the biopsy from the mass in Addie’s left shoulder they were also able to drain 400ml’s of fluid from the shoulder – which has allowed Addie to be more comfortable.
Talking to Addie this morning was great. She was in good spirits and excited about the day. She is really excited for tomorrow because Carrie Underwood will be visiting the hospital, and Addie is determined to get out of her room and down to the hospital’s Seacrest Studio to meet her.
Ryan and I have been very grateful to the two Aunts that took our place out in Philadelphia the last three weeks. Ryan and I were able to have sometime with each other and our other 6 children – which was wonderful and rejuvenating. Ryan will be returning to Philadelphia on Monday the 22nd. He is anxious to get back to Addie.
We are hoping that these biopsies will provide us with some answers – answers that will let us know what medications will stop this mass and promote healing. Love to all, Michal
It’s been another quiet week. Lots of conversations, a couple ideas, a treatment plan being discussed – and home an ultimate goal. Addie will begin vincristine this week. It is a medication that other patients with this disease have used with sirolimus to try to stop the “flare up”. The “flare up” being the cyst in Addie’s back that appears to be growing as well as what appears to be responsible for the excess lymphatic fluid that is penetrating her left shoulder, arm, and chest cavity. We must stop the “flare up” in order to decrease the fluid so that the skin can heal. Once the skin is healed enough the doctors will put in the plurx catheter. Addie can travel home with a plurx catheter, and we should be able to manage her medications and care from home with the help of CMC and possible a home health care program.
The vincristine can show its effectiveness within a few weeks up to a few months. Most of Addie’s care will be through medications at this point – so being home is reasonable, however travel is not possible without the plurx catheter – so patience again is required.
Addie is holding strong. Yes she is definitely tired of this situation, but she continues to not be in pain, and seems to be able to keep herself positive for the most part. Over the next three weeks, I will be traveling home to be with the family. Addie has two very close friends who will be coming here to be with her. She is excited that they are coming, and ready for a bit of a change. I am excited to go spend time with the rest of the family and to get a break from the hospital.
I will continue to keep you all updated – and hope to see Addie’s situation moving in the right direction soon. Michal
Yesterday was tough – Addie’s pleural cavity did fill up with fluid as did her left arm and shoulder. Addie was having significant difficulty breathing and asked for another chest tube. They hesitated on the plurx catheter because of the incision they would have to make in her (very angry hot) skin and because of the amount of fluid that was still being produced. So we have another chest tube and it is not the take home kind. This process has revealed that we must take care of the shoulder and the lymphatic mass in her shoulder before we can take care of the chest tube. How do we get this lymphatic mass to decrease in size and stop producing lymphatic fluid? – hopefully the sirolimus – a medication that can take anywhere from a few days to a year to start working. Addie has been at a therapeutic level on sirolimus for about 10 weeks. Addie did start taking prednisone yesterday as well as an antibiotic to see if that will help with the inflammation. On Monday we may decide to try vincristine to see if that medication will be helpful, but again vincristine could take up to 3 months to be effective, and wether it will be effective is unknown. As I have been told over and over – and as I have come to know personally – this disease is extremely complicated and the treatments are all considered experimental, – a statement that all of you are becoming common with as well.
So, yes- yesterday was rough. Fortunately morning comes – and a good nights rest allows the fighting spirit to continue. Addie and I listen to the reports of the crazy storm, and watch the wind swirl outside her window. I did get to walk this morning – and saw about 6 cars stuck, and very few individuals out and about. I honestly welcomed the 8 inches of snow, and enjoy the quiet that it brought.
Addie is currently face timing with the craziness of our home life in Missoula. We are enjoying watching and listening to the chaos that seems to constantly be ensuing at our home. We miss it, love it and nothing sounds more appealing.