All the comforts of home

It was one of those things. We just had to get to Boston. There wasn’t a maybe, should we, could we-there is no “try” just do or do not.

We have a little split level house in Milton, MA.  After four days of driving and Potty stops, crying kids, falling… I was never so happy to see a split level house in my whole life. But I was also scared to death. At home, I was literally pulling myself up the stairs again. My left leg was a constant pain unless at rest and overall my weakness was debilitating again. It was much like it had been during my July hospitalization, but the pain was more constant instead of severe. Unfortunately I had noticed a large discrepancy my leg length that had really only been worsening. My HLH was attacking my bones and was progressing and I am taking into the high dose steroids, to beat back the HLH and combat the chemo. For those of you who don’t regularly take steroids- they literally eat your bones away. This will become a problem- but let us continue for now. The bathroom I can use is downstairs. The bedrooms are upstairs and I am not in a position to do stairs. And what if I fall? I cannot sit in the van for 7 months. Reverberating in my head…. “do you need an ambulance?” . My darling husband- “I got you.” Here we go. 6 steps, – help from my husband, a walker at the end of the stairs. Faith over fear. We got up them.  I cried.

We started unpacking. Appointments started tomorrow- go, go, go!

When I say that that there are no flat floors in Boston, I am quite sure that I am telling the truth. And floor in our Boston house, I feel like I am constantly rolling downhill, well, because I am. No matter how much I don’t want it to be, movement is a struggle. And there is not a thing I can do about it. I am trying to lift my legs, trying to get strength, trying to heal, but there is something seriously wrong with my left leg. I know if will not be ignored, but it is hard as a 41 year old woman to literally sit and do nothing when there is so much to do. We are all exhausted, but this is only the beginning.

I must admit- I am crazy excited for my appointment.  I have been in the hospital, drank Golytely- but we have made it. I feel like I am crossing the “bridge to transplant.” This is no ordinary bridge- it is not the Golden Gate bridge, but more like a rope bridge in Indiana Jones. The Boston team looks me over. The leg is a problem. I tell them of all the problems it has caused me, what happened in BG, etc. Fortunately my labs still look good. An MRI is ordered. We go home. I actually start to feel calmer. Greg gets me down stairs. I shower for the first time in a couple of days. We eat dinner. I find Amazon Fresh- Life is good.

MRI is not. Unfortunately it confirms what I am most suspecting. My femur head is gone and I have huge pockets of fluid where I should not. Crap. Ok- not going to worry about right now. A big message from Dr. S (who hence shall be called SuperDoctor)- rest. No more testing until things are calmer for you. It will all be abnormal anyways. Honestly, what should feel like a setback, is not. We really all need to rest. I feel like I can breathe. But the normalcy stops there.

We face a wonderful New England Blizzard. I don’t think that phases us at all. We just sit back and enjoy the snow. A little stressful, but we really just sit back and watch. And play!

I fall in the house. But at least not down the stairs. First I am up then I am down. I am just so stinking weak. Can we not have a normal day?

No, no we cannot not. Next, Miles wakes up with a hugely red and itchy “bite” on a Saturday. Where is there an urgent care? Normally, this is not something I would worry about, but I figure I will try his pediatrician. And they are wonderful.  And know what- they are worried about-me. Oh yeah, immunosupressed. So he started on an antibiotic. He does have a little pustule (kind of like a pimple) that opens up- but I will tell you it is getting better.

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We try to rest, we do. It just that it is so hard to be normal. So I know that my MRI is far from great. I get a call that they want me to do a PET SCAN early the next morning. We need to leave at 6:30 a.m. to be there on time. Ok- who needs sleep anyways. And it starts to be a good morning. I dress my self laying down. Why had I not thought of this before? I just don’t have the strength to lift my legs. They hurt. I can’t reach my feet. I feel like a genius. I make my way to the bathroom… I am upright! We start to rouse the kids. And then. I cannot move my leg at all. The pain has increased 10 fold and we have 30 minutes to get to the hospital. I cannot move. I page SuperDoctor (yes at 6:30 she is already taking call). “we really need to get you here.” I need you to complete the PET scan and I think you are going to need to be here a few days in the hospital…” Ahh yes- here’s my normal. The one where things don’t stop.  I have no idea how to get out of the house. I know that I cannot make it down the stairs even with my husbands help. I call 911. Here we go again. I will say EMT and Paramedics are wonderful people. I knew that I needed to be evaluated- and they were kind and considerate and we got me where I needed to be.


I completed the pet scan, more blood (including more blood cultures) and waited for SuperDoctor. Dum, duh,duh, dumMMMMMM! There is great news and not so great news. Let start with the great news– cause HLH is undercontrol on PET scan baby!! very exciting- BUT we think you have a septic (infected) joint. GREAT. I am immediately taking to xray where they do an aspirate for on of the those big HLH effusions and you know what within in 2 hours I am growing buggies on my cultures. Never a dull moment. I am taken to a hospital room. I am put an full fall precautions, because I cannot lift or move my legs- and ya know I am a 41 year old who cannot move her legs without pain (but ya know what I have legs- and shoes I am ok with that- I will lift them again someday), but gosh darn it. Septic joint. Argh.

Ah- day by day, step by step, breath by breath.

On vanc and rocephin just chillin’ now. Feeling better really. Taking my miralax. More strength. A little bit more mobility without pain. Wishing we could just throw in a new hip joint in and be done with it. But as for now, scheduled for debridement tomorrow (cleaning out of the joint).


I do believe. I will trust. Open my ears to listen.

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