Liam's HLH Journey

11:33 am – Physical therapy appointment went good! Still no word on the most recent blood tests 🙁

7:30 pm – The test came back low so Liam will be getting a blood draw tomorrow. Should know those results on Tuesday 🙁 I’m sure he will need a DLI

10:30 pm – I really struggle with staying positive & reality I try 2 convince myself that everything will b ok but Liam has 1of the deadliest diseases

Donor lymphocyte infusion

History

Formerly, the only treatment option that offered relapsed bone marrow transplant patients hope of a cure was another bone marrow transplant. However, the risk of serious, life-threatening complications after a second BMT is great. One strategy of managing relapse, donor leukocyte infusion, might eliminate the need for a second BMT in some patients.

Procedure

Donor leukocyte infusion is the infusion in which lymphocytes from the original stem cell donor are infused, after the transplant, to augment an anti-tumor immune response or ensure that the donor stem cells remain engrafted.^[1][2] These donated white blood cells contain cells of the immune system that can recognize and destroy cancer cells.

The goal of this therapy is to induce a remission of the patient’s cancer by a process called the graft-versus-tumor effect (GVT). The donor T-cells can attack and control the growth of residual cancer cells providing the GVT effect. It is hoped that the donor leukocyte infusion will cause GVT and lead to a remission of the patients cancer.

Patients might require standard chemotherapy, to reduce the amount of cancer cells they have prior to their donor lymphocyte infusion.

Complications

Complications of DLI include acute and chronic graft-versus-host disease and bone marrow aplasia, resulting in immunosuppression and susceptibility to opportunistic infections.^[3]

10 am – I hope today brings only good news. Liam has an eye appointment 11am to check for GVHD. Then 3:00 is our big meeting.

3 pm – We are headed to Liam’s appointment I’m freaking out emotionally hoping all results are good. Please pray for good results

4:54 pm – So the results were not what I was hoping for 🙁 Liam’s graft is dropping T-Cell 60% NK Function 10% B-cell 2% they are running another blood test to look closer at the T-cells if that is low then Liam will need a DLI donor boost which would require more blood from Hunter. We should know more on the new tests tomorrow or next week.

DAY+ 341 – 04/2012        DNA Chimerism Analysis – Blood

(CD3+) T Cell                       60% donor origin (40% host)

(CD33+) Myeloid Cells           unknown% donor origin (unknown% host)

(CD56+) NK Cells               10% donor origin (90% host)

(CD19+) B Cells                        2% donor origin (98% host)

All his other tests look great but without a good graft they mean nothing but a ticking time bomb 🙁

5:37 pm – I feel like I’ve been punched in my stomach. It’s like the life is sucked right out of you.

5:41 pm – I know the results could of been worse but with your child the only thing you ever want to hear is good news. What ifs start to get a hold of you and it’s very hard. Liam is strong and I am very hopeful but the sad reality is that may not be enough 🙁

update from Jared Smith: It’s never going to be over thanks for the support. It’s going to be a life time journey for him.

11:45 pm – Liam has his bone marrow and skin biopsy tomorrow at 9am pls keep him in your prayers that the procedure goes smoothly & only good results.

9:47 am –  Blood draw done! 🙂 Thank you Leslie you did a great job.

10:47 am – Headed to dental to check for GVHD of the mouth. Liam’s asleep stated up until after midnight & up at 6am blood draw he’s wiped out 🙁

12:50 pm – Dental appointment went good 🙂 they didn’t see any GVHD in his mouth.

2 pm – Liver is still elevated so we wait for all the results to come back. They are having me stop the magnesium which is awesome because it was 3 times a day!!

Today we head to Seattle. I’m so nervous but I’m hoping for only good test results please keep Liam in your prayers. I hope now he can slowly start to be a normal little toddler. Please also keep all parents and children that are walking the hardest journey in life imaginable in your prayers too…Nothing can prepare you for watching your child knocking on deaths door. But the emotional support from others, so helps in those times. Thank you

Update 8:15 PM: 

• Almost 2 Seattle here will lie the truth on wether or not Liam’s bone marrow transplant will be his cure for HLH, I sure hope so! Prayers pls