Prepping to go to Transplant

Tuesday, January 7th

Avery had a full day today as she prepares to move to Transplant next week. They were unable to schedule her Nuclear Renal GFR scan anytime soon, so we opted for a 12 hr Creatinine clearance test. This meant we started the day waking her up as 12am, 3am, and 6am to collect urine. The collection lasted from midnight to noon so we could drop off the sample at our 1pm appointment. She handled it like a champ and didn't get too upset each time I had to wake her.

Next up was an appointment at the dentist for fillings. Yesterday she went for a cleaning and x-rays to check for cavities or sources of possible infection. She started off doing well, but ended up only letting them clean her top teeth. She also wiggled for her x-rays but refused a repeat. There were two spots of decay on her back teeth due to crowding that we needed to get filled. I was prepared for the worst when we arrived this morning, but she surprised us all and did an excellent job! She let them put the nose on with no objections and then followed directions(and giggled) the entire time. It was definitely an answer to our prayers to be able to get the issue taken care of so quickly and easily. We have been blessed with a wonderful Dentist(Dr. Vann) and his entire staff who have been so loving and supportive ever since Avery was diagnosed.

This afternoon we had to go to the hospital for a consult and more tests. Avery did well getting her vitals, but quickly fell apart afterwards. It took 4 or 5 of us to hold her down to get an echocardigram and her port accessed (her physical strength often surprises everyone). Then she had to get an EKG. Bless the sweet lady who administered the test! She was so kind and patient as Avery fussed and kept pulling the leads off(some on purpose... some not). We were finally able to get a good reading.

Finally we met with the Transplant team to discuss what to expect. We discussed all of the horrible side effects, both short term and long term. We discussed the types of complications that often land you in the ICU, and we discussed the plans and precautions to stay on top of those. We were glad to have a better idea as to what we can expect, but it was both mentally and emotionally exhausting thinking of what the next few weeks hold. Avery was so tired, she fell asleep in my lap during the consult and continued to nap until about 5:45 pm.

Our next few days are full of final tests and preparations for being admitted. Our current schedule is:

- Wednesday 1/8 - CT scans

- Thursday 1/9 - Admission for MRI

- Friday 1/10 - Brain and Spinal MRI and LP

- Monday 1/13 - Final meeting and sign consent

- Wednesday 1/15 - Admission to transplant and placement of central line

- Thursday 1/16 - Tuesday 1/21 - 6 days of high dose chemo

- Wednesday 1/22 - Thursday 1/23 - Rest

- Friday 1/24 - Stem cell rescue

Please continue to pray for:

- Clear MRI and LP

- Avery's anxiety and fear

- Safety and protection from chemo side effects

- Avery's complete healing