Liam Parker

First post: Mar 3, 2021 Latest post: Apr 17, 2021
This site will serve as a space where we will share updates and outcomes, setbacks and triumphs, tears and laughter.  Your support is greatly appreciated whether it be a journal entry, a picture, a laugh or a prayer.  Most of all, just knowing that we have the love and support of each of you gives us the strength we need to face each day.       Recently our family was faced with the news that has changed our lives.  For about a month now Liam has been dealing with high fevers, fatigue and loss of appetite.  He has been in the ER at Hopkins several times and they began seeing him as an outpatient to determine a diagnosis and provide treatment.  We had been managing his high fevers with Ibuprofen every 6 hours, but his condition steadily worsened.  On Saturday, February 20, 2021, he was admitted to Johns Hopkins Children’s Center.  As the week progressed, he started to take a turn for the worse and medical testing intensified.      On Thursday, February 25, 2021, Liam was diagnosed with Anaplastic Large Cell Lymphoma (ALCL) Stage III.  This is a rare form of non-Hodgkin Lymphoma (NHL), and one of the subtypes of T cell lymphoma.  On top of this diagnosis, he was also diagnosed with Hemophagocytic Lymphohistiocytosis (HLH), a rare disease that can occur when you have lymphoma.  As a result, the oncology team started a prophase of chemotherapy right away.  Liam will likely experience significant side effects such as nausea, fatigue and will be at a very high risk for infections due to his compromised immune system.  Initially he will be hospitalized for 2-4 weeks until he is strong enough to go home.  From there he will continue his treatment for lymphoma as an outpatient.      The journey ahead is a long one for Liam.  His treatment plan basically follows the CHOP method of chemotherapy, but Hopkins is using different types of chemo medication (Brentuximab, etc..) in Liam’s treatment.       The first three drugs of the CHOP chemotherapy regimen are usually given as injections or infusions of veins (IV) on a single day, while dexamethasone (steroid) is taken as pills for five days.  The regimen is given in cycles 2 weeks apart for 6-8 cycles covering 5 months. In between cycles, Liam will get blood transfusions and lab work to monitor his blood levels.  He will be evaluated after each phase to make sure the lymphoma is not getting worse.  If it has not, the doctors will continue to the next phase. If they see that the lymphoma is progressing, the Hopkins Pediatric Oncology Team will take a different approach.      As you can imagine, this has been very difficult for Liam and our family.  It is hard to put into words what we are experiencing at this time.  Everything is happening very quickly and our world seems to be spinning backwards. As the reality of it all begins to sink in, the uncertainty of the days to come is both frustrating and scary.  It is so easy to let emotions overwhelm us and we can get lost in the medical lingo, hospital walls, and treatment plans.   However, even within the chaos of the past month one thing remains the same, the power of faith and family.  This journey will be a long one but there is peace in knowing that we will not be going through this alone.  Liam is surrounded by his family’s love and strength and there is no medical procedure greater than the presence of those who love us.   The touch of a parent’s hand, the gentle kiss of a grandmother, or the encouraging words of a friend are just as powerful as medical science.  Even more, we rest on the belief that the power of prayer can heal both body and soul and we know that God is holding our family close to His heart in the days ahead.      We have decided as a family that at 7:00pm every evening we would stop and pray, think a good thought in Liam's name.  We know many of us do this throughout the day for different things at different times.  It might help us to be more connected if we all set aside this time for one prayer or positive thought that is for Liam, Pat and or Stacey
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