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May 12-18

This Week

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Since getting home from the hospital last week, Declan hasn’t been quite himself. He has been extra tired and wiped out. He has developed some mouth sores and extremely dry, cracked lips which are quite painful. He also had a reaction to the adhesive used on his back when he had his spinal chemo (a reaction he has never had before). We have pulled out all the stops with direction from his doctors as how to best treat his lips and mouth. He was prescribed “magic mouthwash” which has lidocaine in it to help numb his mouth and lips and give him some relief. That has helped some. We are finding he doesn’t have much of an appetite and we are having to really push fluids to keep him hydrated. Even though he wasn’t feeling great he still went out Friday to play some catch and pitch to Finn in the backyard. And Saturday we went to a Beloit Skycarp game. Monday he attempted to go to school and he called me to come get him around 10:30 because he wasn’t feeling well. Yesterday he stayed home with Chris for the day and took it easy. We got the bone marrow aspirate results back from the clonoseq test. This is the newer test that can look at millions of cells. At the end of induction his result was 37 out of 1 million cells. Now at the end of consolidation he is down to just 1 cell per million. They look at 4 main clone sequences and 2 of those sequences were undetectable and 2 of the sequences showed 1 cell per million. I was hoping for completely undetectable but from the words of his doctor. Declan is in “deep remission” and are very, very happy with the result. He is only through 2 phases of treatment and the leukemia is almost undetectable. He has 2 more years of treatment to wipe out those remaining couple of cells. He will not get another bone marrow aspirate during treatment because there is no concern he won’t reach complete remission. This bone marrow test was an elective test that we chose to do just to have a comparison as to how he was responding to treatment. This was amazing news to get and we are so happy he is responding so well to his treatment. And it was an amazing birthday present for Declan as his birthday is today. Declan is officially 7. He is the strongest and bravest little boy I know and I am so proud of him not only for all he has gone through these last few months but for being the kindest and most helpful kid there is. He is always trying to help others and make people laugh, he is extremely smart and will always find a way to use his brain to come up with a solution. (Something the physical therapist mentioned last week, that he is too smart for the games they were playing). This morning he had to go get a blood draw to check his counts and everything looks good to continue treatment on Tuesday but he will have one more blood draw on Monday to be sure. He was lucky enough to be able to go to school today. He was so excited to celebrate with his friends and bring in his birthday treat of monster cookie bars that we made together last night. Thank you to everyone for the continued thoughts and prayers and for checking in on him and us. 

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