New Day, More of the same

 I know so many people can relate, but lately life feels a bit like GroundHog's Day. Our days are full of school, doctors appointments, ballet and horseback riding. The kids continue to play so well together and really are enjoying their time together. We all love having Mimi and PopPop so close. We are just ready for it to be safe to do more of the fun activities we love.

Medically, we have had a few appointments. Maddy saw her knee surgeon last week. We discussed the pros and cons of doing surgery now verse trying to wait. Basically, Maddy's knee has started to give out on her at times causing her to fall. The good thing is she has no pain with the dislocations. The surgery she needs is pretty invasive. It requires rebuilding a ligament as well as cutting a tendon, realigning her knee cap and reattaching the tendon to bone with screws. If we do it now, she may need a second surgery later on or it could cause growth issues within the knee. The problem with waiting is that at any point point she could have a "traumatic" dislocation that is extremely painful or completely tears ligaments. Ultimately the surgeon feels like the best outcome is to try and wait until she is over 10. We will continue to watch and reevaluate each year or sooner if any symptoms progress. 

Both kids had labs earlier this week, but I do not have results yet. 

Today we saw Cardiology with both kids for EKG's, echos and a visit with our local cardiology. Both kids had good reports. 

As for Bruce, his next appointment is the week of Labor Day. The doctor will have all test results back then and make the nest decisions on what Chemo is best to treat with. 

I had an appointment with my dermatologist yesterday and had a spot biopsied to check for skin cancer, but am otherwise doing well as I juggle the kids, care, school, the house, bills and helping Bruce. 

Maddy and I just finished her 7th week of Homeschool. She has been doing extremely well. She misses her class, her teachers and her friends, but I feel confident we made the best decision for our family in this uncertain time. Alex starts his schooling on Monday.

Thank you for your continued prayers as we continue to march forward trying to always choose joy and kindness.

Ali

Next Steps

 Bruce had his oncology appointment yesterday. They have decided he does need Chemotherapy. They are doing some more testing on his tumor to determine the best medications to use. Thank you for continuing to pray for us as we take the next steps on this journey.

Ali

Family

 This has been a month of family! We are LOVING having Mimi and PopPop live so close and see them most days. Maddy has finished 6 weeks of First Grade and is doing a great job for me.  She continues to participate in Hippotherapy, but we are otherwise still quarantining pretty strictly because of the kids immune deficiency. The kids have been spending a lot of time together playing games and watching movies. Maddy had her first sleepover at Mimi's last night. And we snuck away with Ellie for ice cream one day! Bruce has recovered extremely well from his surgery. He meets with Oncology tomorrow to determine next steps. We are so grateful to everyone who has supported us in so many ways. I started my leave from work last week and that has helped my stress level as I have more hours in the day to meet the needs of our family. I am still extremely busy since we have no nursing help right now with the kids and their medical care is pretty intensive on a daily basis. We are just using this time to focus on family and loving each other well. 

Here are a few highlights from the past two weeks:

As for a medical Update:

We had three appointments with our Houston team this week via Telehealth. The first was with a nephrologist to try and sort out the changes we have been seeing with Alex's blood pressures as well as fluid balance. At the end of the day, it comes down to Mito. His kidney's are not functioning correctly because they simply lack the energy needed to do their job. Our hope is that this will improve and is because of the stress his body was under with surgery and recovery. 

Our second appointment was with Dr. Koenig, our Mito specialist/neurologist. We did not make changes but are watching/need to follow-up on a few things with each kiddo. For Alex, the main thing is we need to get a spine MRI to check on his syrinx. (Fluid in his spinal cord) Alex's syrinx is extremely large and any change could cause damage to his cord. Other than that it is a matter of not stressing his body and trying to let his recovery continue. For Maddy, she has been having headaches that Dr. Koenig believes are migraines based on Maddy's answers to questions and my input on what she tells me. At this point we are going to just watch as we don't want to add a daily medication unless absolutely necessary. She is also having some peripheral neuropathy. We are taking the same approach in this area. Dr. Koenig did want us to follow-up with the knee surgeon sooner rather than later because her knee is starting to give out on her. (We actually got an appt for this week). Her biggest concern is that we get a echo of her heart ASAP because past testing plus some of her other issues put her at very high risk for cardiomyopathy. That was the gist of our appt with Dr. K.

Wednesday we met with Dr. Pacheco, our immunologist. From an immune standpoint the kids are doing really well. (that's what happens when you stay in your house for 5 months 😉) She wanted to be sure we were taking all precautions to keep our family safe. Dr. Pacheco is a doctor that has watched Alex fight for his life many times. She knows him better than almost any other doctor. When Alex let her know that we are struggling to come up with a plan to control his pain adequately, she was adamant that "pain is not an option". I have reached out to our team here once again to try and come up with a plan that is acceptable with everyone, but if we are not able to we will work with Houston on this part of Alex's care. Alex was so relieved to have a doctor validate that he shouldn't have to hurt and or live with anxiety of worsening pain with no medications to help. He was actually in tears by the end of his appointment because this has been such a concern. 

While having a team 5 hours away is not always ideal, having doctors that have walked this road with us for 13 years and understand all the facets of Mitochondrial Disease is so important in the kids care.

Please continue to pray for us as we navigate the next few weeks with decisions to be made in treatment for Bruce, Alex and Maddy.

Ali

Results- Finally!

We FINALLY have results!!!!

Goodness gracious it has been a crazy long wait. The doctor explained that they switched their computer system and for some reason they cannot receive pathology results. They had to call to get Bruce's results this morning!!!

Overall, it was the best news we could have hoped for. The tumor and one other polyp were both full of cancer, but were removed with surgery. The cancer had not penetrated through the wall of the intestine. They tested 23 lymph nodes and all 23 were clear of cancer. His cancer is considered Stage 2 based on the size of the tumor and the fact that it had caused a partial bowel obstruction. We are still unsure on next steps. They are setting up an appointment with an oncologist. The oncologist will determine if further treatment is needed. He felt like it could go either way. 

We are so grateful for this good news and will continue to take this journey one day at a time. Thank you for your continued prayers and love.

Ali

Not a Good Summer

Should I start with the good news or the bad? Well let me try again, I don't really have good news, but Maddy did have some fun this week. 

I kind of feel like the hits keep coming! This morning Alex's nurse of 4 years who helps me two days a week quit. Not having her adds to what I need to do, but it is so much more than that. She is Alex's "buddy" who he laughs with. She is someone to help Maddy when I can't do one more thing. She is a "family member"and one of the few people who gets what our life is like. She is the only other person who can do some of Alex's care. Her leaving means I cannot leave the house for any extended period of time (more than a few hours). As I told someone today this was the straw that broke the camel's back today. All of the tears I have managed to keep at bay spilled over today. I am simply one person and our family has endured so many hardships. Because of Coronavirus, I am unable to even entertain the idea of finding someone new. We cannot have someone in our house who is not (and anyone they live with) strictly quarantining. That is a lot to ask of someone and trust them to abide by. And so I will continue to put one foot in front of the other. I will pray and I will trust that God is holding us tightly. That he will provide financially while I take time off work, that he will protect us health wise and that he will allow me places of rest. 

For those that have been waiting and praying with us....we still do not have Bruce's pathology results despite calling several times. Bruce has his follow-up on Wednesday so hopefully we will have news then!

We did allow Maddy a small slice of normalcy this week. Anyone who knows us knows that Maddy's passion is horses. The week before COVID became our life she attended three days of camp during spring break. After careful consideration Bruce and I decided to allow her to go back to camp this week. It is one instructor and three other girls so it is pretty small and about as safe as you can find during this day and time. Maddy loved every minute...the feeding, the grooming, the mucking stalls and especially the riding. The fact that we also got to love on our friends 5 week puppies at the end of each day wasn't too bad either! 

Maddy and Muffin

You can never get too much puppy love!

Day 2 of Camp

When the big girls tell you not to let Reed escape!

Mad and "Hopper"

Alex needed a turn!

Maddy getting love from Sarah on her last day.

Feeding Muffin

Thank you for continuing to pray for and love our family as we navigate this rough season.

Ali