This is an update from my Uncle Dan who has been blogging on his own, the journey that he and Julie are on:

January 26, 2016

"Today is Day 91.

Sorry for the sparse updates, I still cannot figure out where the day goes during this process. Even days "off" with no appointments seem to get swallowed up in a hurry. Thanks so very much to all of our supporters!

A lot has happened since my last post, so I will try to quickly catch you up on the good and the difficult days we have had.

In December Julie began having a periodic need for blood transfusions to maintain her hemoglobin levels. Hemoglobin is the portion of the blood that carries oxygen to the tissues and organs. Fortunately you can receive these cells; however, there are problems that can arise down the road as a result. She started requiring blood every 2-3 weeks. This is a result of her donor being a different blood type than her. She is O+ and the donor is A+. This means that her blood contains antibodies to the new cells, so when they are produced, her body wipes them out. This will eventually cease to be a problem when her blood type changes to A+. There is no set time frame for that, we just have to wait for it to happen on its own. 

Just before New Year's Eve, Dr. Anasetti told Julie that she could visit home briefly. This was a real boost to hear, and we quickly threw our things in the car and made a trip home. The visit was short and bittersweet. We desperately wanted to be there, but knew we could not stay. It was also quite an ordeal to even visit, as the first thing we had to do was sanitize everything that Julie could come into contact with. It was a bit overwhelming, but what a feeling to be home again, even if briefly. The visit was overshadowed by the fear of needing care at Moffitt. We were told that if Julie spikes a fever due to bacterial infection, she needs antibiotics in her veins within 60 minutes. With Moffitt 90 minutes from home we were worried during the entire visit.

In the beginnning of January, Julie's platelet and white blood cell counts began to drop dramatically. White cells are more complicated than red cells to replace, as Julie cannot be transfused with them. She began getting Neupogen shots to try to boost the levels, but this did not immediately help. The culprit was identified as an antibiotic she was taking as a preventative measure against bacterial pneumonia infection, Bactrim. Apparently Bactrim has a side effect in some people of causing the body to stop producing some blood cells. The Bactrim was discontinued, and daily Neupogen injections began to have the desired effect. That was an extremely difficult and emotional time that we are glad to say appears to be behind us now. Julie has now gone over a week without Neupogen and cell counts appear to be climbing once again.

This week we have begun the process of retesting many of the things that were checked before transplant to see how Julie compares. This is part of the process of letting us go home, but we still do not know when that might occur. We are particularly looking forward to the discharge class which we attend in 2 days. It will be, for the most part, a boring rehash of all we have been taught already and we couldn't be more excited about going. It does not mean we will go home right away, but we do need to attend before we leave Tampa. We wait for the doctor to give us the word on that. 

On the subject of going home, it may be hard to understand, but we do have mixed emotions. We want, and need, to go home more than anything. But, there is a strong fear of it as well. We are in the Moffitt bubble and have care close by if we need it. In Tampa, we are distanced from the pressures of home, yard work, housework at a larger home, financial pressures, and me returning to work. Our children need us, as this separation is, understandably, wearing on them too. We must go home - and we will, but when. When we do, Julie will still need to return to Moffitt at least weekly and her care at home does not change much from what it is now. We have to continue to be ultra careful with food safety, avoid everyone who is sick, has been sick, or has been in contact with anyone with a cough, cold, runny nose or fever. I will continue to sanitize her bathroom every day, and I will use a separate bathroom as I have done since October. We know everyone will want to visit, and give hugs like most people get when they come home from medical treatment, but we will not be able to do that. Getting home is the next step, but is far from the final step. That final step remains 3-5 years away.

So that is where we are. Julie is doing great and is feeling well. We are less worried about today, and focusing on the future. The future holds many fears, but getting Julie to that future has been our goal and we are another step or two closer to that now. Love to all and thank you all so very much for following our story.

Dan & Julie

P.S. The photo is of Julie during a walk while waiting for blood test results. The pond is across from Moffitt Cancer Center, which is located on the campus of the University of South Florida."