How does one find the words to fill a page of something like this?
How do you keep the words informative, neutral, and not lost in the feelings that sometimes rob hours of our days. When your just too tired, unsure or lost.....? Succumbed to the humble feelings of "it's nothing you did, it is what it is".
I'm not sure I have the answer to any of these, but I will tell you what we know, what Grace, Maceo and I hold to be true and how you can help:
What we know:
Unfortunately, Maceo has been diagnosed with Myelodysplastic Syndrome (pediatric MDS) with a rare variable within the larger disease. This is a rare disorder in which the bone marrow does not make enough healthy blood cells. Fortunately for us there's a cure; a bone marrow transplant.
Under the guidance of our kick ass team, we've elected to go through this process at Doernbecher Children's Hospital right here in Portland, Or. We don't have an exact date scheduled yet, but we are planning for early 2023. As many of you may know this is not a process to enter into lightly. In fact, we've heard from multiple trusted sources it may be one of the hardest procedures we could put Maceo through.
When all goes as planned, we're expecting to be in the hospital 4-6 weeks under 24/7 care. We'll then be released to sleep at our house and are expected up to OHSU daily, until about the 100th day after the transplant. Ultimately, milestones will be reached the first week and every week until we reach that 100-day mark. The 100-day milestone is huge! Then 6 months and 1 year post transplant.
Due to the nature of the procedure Maceo, Grace and I will be quarantined through the first half of this process and perhaps even longer.
Are you letting out a big heavy sigh yet........
As we move through the process, we are planning on keeping this site updated with Maceo's progress and journey.
Where we're at:
Maceo, Grace and I take it minute by minute, day by day.
Maceo finds a lot of comfort in the fact that we finally found something wrong. The search for his unexplained fatigue, headaches, intermittent stomach aches, pale skin and spontaneous nose bleads have been going on since 2015.
No, we didn't think this is where it would end up, but we have faith and accept that this is the path we're walking on. All three of us know in our hearts of hearts, Maceo is going to feel superhuman when all of this is said and done.
Is it a fighters' fight?! You bet, but Maceo has more grit and love then anyone I've been blessed to be around.
Love always wins!
The helping part:
I'll be honest, Grace and I are quick to jump in and help others but asking for help is an area with a ton of personal growth potential.
Maceo's school is coordinating a blood drive with the Amercian Red Cross and a donor drive for Be the Match. Both are excellent organizations and we're humbled by this event. The information for this event is in the journal entries.
Although we're hesitant, we're not really sure how big of financial impact this will be on our family. We're going to listen to all the sound advice we've received and set up Go Fund Me. Links will be here on this site when it is live.
A meal train link is up and will be filled out with request soon.
Maceo loves a simple shout out. An email, card, google chat, zoom hang..........would all help fill Maceo's social gas tank!
Finally, a simple gesture of just keeping Maceo in your thoughts, intentions, blessings, well wishes and prayers is going to keep the ethos fed with the energy we're going to need to get through this.
Thanks for taking the time to read this! Grace and I are incredibly honored that Maceo picked us to help him with this healing process.
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Exploring Munich
Rathaus-Glockenspiel in Munich, Germany
So many pretzels!
Highest point in Germany…Zugspitze
Brandenburg Gate, Berlin GermanyPatients and caregivers love hearing from you; add a comment to show your support.Help Maceo Stay Connected to Family and Friends
